Handling oats when you possibly react to them

[Acacia Voynar]

Good morning!  If you also react to oats, does that mean you have to treat them the same as gluten?  Specifically, do you need to avoid any cross contact with oats (even certified gluten free ones)? 

I suspected I was reacting to them very early on in my diagnosis and I eliminated them from my diet at that time (2 years ago).  I continue to have symptoms and I do handle certified gluten free oats in our 100% gluten free household, as I make things for my husband with them. Sometimes oat clouds will come out of the bag, into my face, and I have never thought to be extra careful with them in my kitchen. 

I do continue to have symptoms despite a strict gluten free diet for 2+ years, and never eating out.  My GI Dr is currently treating me for refractory celiac.

Curious to others experience with oats and what precautions are necessary.  Thank you! 😀

[Bebygirl01]

45 minutes ago, Acacia Voynar said:

Good morning!  If you also react to oats, does that mean you have to treat them the same as gluten?  Specifically, do you need to avoid any cross contact with oats (even certified gluten free ones)? 

I suspected I was reacting to them very early on in my diagnosis and I eliminated them from my diet at that time (2 years ago).  I continue to have symptoms and I do handle certified gluten free oats in our 100% gluten free household, as I make things for my husband with them. Sometimes oat clouds will come out of the bag, into my face, and I have never thought to be extra careful with them in my kitchen. 

I do continue to have symptoms despite a strict gluten free diet for 2+ years, and never eating out.  My GI Dr is currently treating me for refractory celiac.

Curious to others experience with oats and what precautions are necessary.  Thank you! 😀

Are you sure it's oats? Maybe its from consuming dairy.  That's what happened to me. I eat oats, eggs, and quinoa without issue now that I cut out the dairy. It was the second culprit after gluten. Where there is one autoimmune condition, there will be another. Dairy is the second biggest culprit for allergies in foods. Also, make sure you take the Digestive enzymes for gluten, dairy, sugar, and carbs each day and a good probiotic each day, you'll feel amazing in just a week, you will know by that time if you also have another allergy. I don't do tests, I know what is making me sick and now I'm much better, so the proof was in the results. "hey have wonderful Vegan (dairy free) and gluten free cheese, milks, butters, yogurts and sour cream, etc out there now.

[Acacia Voynar]

1 hour ago, Bebygirl01 said:

Are you sure it's oats? Maybe its from consuming dairy.  That's what happened to me. I eat oats, eggs, and quinoa without issue now that I cut out the dairy. It was the second culprit after gluten. Where there is one autoimmune condition, there will be another. Dairy is the second biggest culprit for allergies in foods. Also, make sure you take the Digestive enzymes for gluten, dairy, sugar, and carbs each day and a good probiotic each day, you'll feel amazing in just a week, you will know by that time if you also have another allergy. I don't do tests, I know what is making me sick and now I'm much better, so the proof was in the results. "hey have wonderful Vegan (dairy free) and gluten free cheese, milks, butters, yogurts and sour cream, etc out there now.

Thanks for the suggestion! I haven't had dairy in 2 years, it was cut out quickly after going gluten free. I do take digestive enzymes with everything I eat also.

[cristiana]

Hi Acacia

There are so many questions I have, about oats, ten years in from adopting a gluten-free diet, that are still unanswered.  It took me several years before I could consume them again, and although they don't appear to affect my TTG numbers, they can still make me feel uncomfortable if I eat too many. 

I would say it would be worth trying to cut back on the sort of contamination you describe, to see if it helps, there is nothing to lose. 

The old post might be of interest.  It is nothing to do with refractory celiac, but it discusses cc of oats in production facilities.

Incidentally, the symptoms I mention in it come and go, and I'm still none the wiser.

 

[Scott Adams]

Around 9% of celiacs cannot tolerate avenin, which is the protein in oats, even if the oats are 100% gluten-free.

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/

[Russ H]

Generating a coeliac-type immune response to oats (as in T-cells recognising avenin) is uncommon. People with untreated coeliac disease often have antibodies to oats but they also have antibodies to several other foods such as milk, and these disappear on a strict gluten-free diet. I suspect that a lot of people react to the fibre and carbohydrate in oats rather than avenin. There is a good summary in this review:

https://www.frontiersin.org/articles/10.3389/fped.2019.00384/full

There is an interesting comment at the bottom by a couple of researchers employed by Pepsico (who have an interest in gluten-free products). They suggest that the oats eaten by subjects in some of the studies are likely to be contaminated with gluten and this could explain the variation in results between studies.

[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 may also have sensitivity to avenin, leading to symptoms similar to gluten exposure.

The percentage of individuals with celiac disease who cannot tolerate pure oats varies. Research and clinical studies have reported different rates of oat intolerance among celiacs. Some studies suggest that a small percentage, perhaps 5% to 10%, may still experience adverse reactions to pure oats. However, the exact percentage can be influenced by several factors, including the source of oats, the degree of cross-contamination, and individual variability.

[knitty kitty]

On 9/20/2023 at 8:37 AM, Acacia Voynar said:

Good morning!  If you also react to oats, does that mean you have to treat them the same as gluten?  Specifically, do you need to avoid any cross contact with oats (even certified gluten free ones)? 

I suspected I was reacting to them very early on in my diagnosis and I eliminated them from my diet at that time (2 years ago).  I continue to have symptoms and I do handle certified gluten free oats in our 100% gluten free household, as I make things for my husband with them. Sometimes oat clouds will come out of the bag, into my face, and I have never thought to be extra careful with them in my kitchen. 

I do continue to have symptoms despite a strict gluten free diet for 2+ years, and never eating out.  My GI Dr is currently treating me for refractory celiac.

Curious to others experience with oats and what precautions are necessary.  Thank you! 😀

Have you been checked for nutritional deficiencies? 

Are you taking any vitamins?  Minerals?  

Our bodies cannot heal until we provide the proper vitamins.

Have you tried Benfotiamine?  It's a form of Thiamine Vitamin B 1 that promotes intestinal healing.  

Tryptophan, a form of Niacin B 3, is also beneficial in healing the intestines.  

Is your Vitamin D level above 80 nmol/L?  At this level and above, Vitamin D works like a hormone and reduces inflammation and regulates the immune system.

Are you following the Autoimmune Protocol Diet?  It's been shown to promote intestinal healing, designed by a doctor who is a Celiac herself.

Are you taking any medications?  Nsaids, PPI's, and antidepressants have been shown to promote continuing inflammation in Celiac people.