Oats Not Safe for Some People with Celiac Disease

I have always had problems with oats. Even as a child before I heard of celiac disease. When I work work in the oat or wheat fields, the next day I would be so sick. My stomach hurt and other things that I know are now are celiac disease related. I can,t eat oats to this day, even gluten free.

I'm in the 8%, and that was from a Bob's Red Mill gluten-free oatmeal. Now I stick with their Mighty Tasty Hot Cereal, with brown rice, corn, sorghum, and buckwheat.

I have always had problems with oats. Even as a child before I heard of celiac disease. When I work work in the oat or wheat fields, the next day I would be so sick. My stomach hurt and other things that I know are now are celiac disease related. I can,t eat oats to this day, even gluten free.

I have a reaction when feeding wheat hay, mainly if the wind blows hay back on me or a cow gives a slice of hay a big shake and gets it on me.

Oatmeal porridge was breakfast in our house ever since I was born - it made me nauseous just to look at it so I managed to avoid it - but - there were oatmeal cookies which I loved - and got violently sick after - this was long before I was diagnosed - therefore - oat products have been off my diet despite many celiacs telling me they had no problems - thank you for clarifying the situation - I too am a member of the 8% club:)

I'm also one of the 8% of celiacs that can't tolerate any oats, and my trigger was also Bob's Red Mill gluten-free oatmeal, which I tried for the first time two years after I was diagnosed with celiac disease. It's difficult to be a no-oats celiac in the U.S., where many gluten-free products that do not contain oats share production lines with "gluten-free" oats. I had residual villous atrophy until I dropped all gluten-free products from Bob's Red Mill (not just oats) and Lundberg Rice (use oats as a cover crop).

suggests that doses of oats commonly consumed are insufficient to cause clinical relapse, and supports the safety of oats demonstrated in long-term feeding studies.

Literally from the source material used for this article...

Here is the last paragraph summary from the article's abstract:

"Our findings indicate that celiac disease patients possess T cells capable of responding to immuno-dominant hordein epitopes and homologous avenin peptides ex vivo, but the frequency and consistency of these T cells in blood is substantially higher after oral challenge with barley compared to oats. The low rates of T cell activation after a substantial oats challenge (100 g/d) suggests that doses of oats commonly consumed are insufficient to cause clinical relapse, and supports the safety of oats demonstrated in long-term feeding studies."

To me, it is saying that cross reactivity with oats only happened in a test tube environment that utilized amounts of oats so large that it is unlikely to happen in real life unless barley were also being consumed. In other words, the presence of barley enhanced the cross reactivity of the oat proteins in celiacs and that this combination of grains is responsible for the 8% of celiacs who react to oats. But then that raises the question is the barley the problem instead of the oats?

I have been tested by Dr. Kenneth Fine. He told me OATS is a big NO NO! I like oatmeal but will never eat oatmeal again. I can't have dairy, wheat, soy and hard stuff like sunflower seeds and popcorn. I can't eat peanuts. I was wondering if I could eat boiled peanuts. They are popular down here in the south. I really like boiled peanuts with lots of salt. 

I suffered a seizure about three years ago and the doctor labeled it pseudo-seizure. I was put on Kefflax. It's a horrible medication that causes you to over-salivate. I have had all tests performed - MRI, 3 hour Ct Scan and others. The only thing that showed was minor white tissue in my brain is effected. That has me concerned. Can anyone tell me what's going on with my brain? I am trying to see a neurologist but they haven't called as of yet. Is it years and years of drinking cow's milk, oatmeal, wheat toast, etc. It has me concerned. Thanks, Dorothy 

Kefflax? Did you mean Keflex? Keflex is an antibiotic. Why would your doctor put you on that one after a seizure?

No, it's Keppra. My bad and I'm sorry. Here is the report from my MRI. I do believe the problem is eating oats, wheat, drinking milk, eating cheese, eating soy, and consuming peanuts. You wouldn't think I would have this damage to my brain, but here it is:   

HISTORY: 

SEIZURES G40.301 

COMPARISON: 

MRI brain 7/22/2022 

TECHNIQUE: Multisequence MRI of the brain without intravenous contrast. 

FINDINGS: 

Diffusion imaging shows no hyperacute, acute, or early subacute infarction. 

Mild chronic small vessel white matter ischemic changes and mild diffuse parenchymal volume loss. Hippocampi are symmetric and demonstrate normal morphology and signal characteristics. 

There is no mass effect or extra-axial fluid collection. 

The ventricles are normal in size. 

Major intracranial arterial flow voids are present. 

Paranasal sinuses and mastoid air cells are predominantly clear. 

Marrow signal pattern is within normal limits. 

IMPRESSION: 

1. No findings of acute intracranial abnormality. 

2. Mild chronic small vessel white matter ischemic changes and diffuse 

parenchymal volume loss. 

Interpreted By: Tyler McKinnon, MD 1/24/2024 5:21 PM 

Electronically signed by: Tyler McKinnon, MD 1/24/2024 5:23 

PMHHHMR240000465 

Report created in ARA Powerscribe. 

Report Request ID: 304370880 

MD MD, NOT-ON-STAFF 

1/24/2024 

1/24/2024 

Dr. Jennifer Jones, MD