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Oat Flour making me sick?

mayfly25

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mayfly25 Newbie
mayfly25
Posted

Short background - I was formula fed at 8 months old and ended up in the hospital.  They couldn't figure out what was wrong with me but I was in there for 6 weeks.  I came home weak, low weight, and still sick.  Childhood was spent relatively normal but I did have a lot of bowel issues.  As a teenager I was diagnosed with irritable and inflammatory bowel syndrome.  They put me on meds to help with the flare ups.  I had a biopsy done of some polyps in my intestines and they came back normal (not cancerous).  So, I just kept taking meds.  A year later I was passing out on the basketball court, haveing muscle spasms, seizing up if I spent too much time playing sports (I'm a huge sports lover and distance runner), and was just sick every day.  Finally I was diagnosed with Hashimoto's thyroiditis at 13 years old.  By 16 my thyroid had completely shut down and I produce nothing on my own now.  In my late 20's I had a baby and almost didn't survive his birth and ended up in a coma.  I had a hard time recovering and was then diagnosed with yet another auto-immune disorder (Addison's disease).  Finally my husband did a rotation on non-infectious diseases (he was in medical school at the time) and came home saying I might have celiacs.  I had a colonoscopy and biopsy done of a few polyps again.  This time they came back with a diagnosis of celiacs.  I was devastated (a long distance runner needs carbs, man!!).  However, I was so sick I had no other choice than to go gluten free.  I was doing great!  Then, I thought I could have just 1 dinner roll.  I spent that night vomiting, shaking, shivering, seizing up, in pain, and absolutely miserable.  So, I vowed never to eat gluten again.  And I don't anymore.  I even have separate containers for my peanut butter, honey, and nutella labeled with "MOM" on it so the kids don't use it.  I was feeling great and doing very well.

Fast forward to 3 years of gluten free and I'm back to feeling sick and miserable.  My muscles ache, my stomach hurts, I'm exhausted, I wake up nauseated, I have body aches, I've vomited, etc.  It's like I've eaten gluten, but I know I haven't.  The ONLY two things I have changed is that I 1) added Bob's Red Mill's Gluten Free Oat Flour to my diet after a friend showed me how to make cakes, dinner rolls, and bread with it.  It says it is certified gluten free.  It's made in a gluten free facility and 2) I started eating gluten free oatmeal in the mornings to fuel up for my long runs (training for a 50k and I need food).  This also says certified gluten-free.  I didn't think anything of it until my husband suggested that perhaps the oats are causing me issues.  But - I can't find any substantial data showing that oats and celiacs don't mix.  It all says to make sure the oat flour and oats are produced in a certified gluten-free facility - which I have done.  Do any of you experience the same symptoms when eating certified gluten-free oats/oat flour?  Is there any evidence or data showing that it's unsafe for celiacs to eat these?  Or, is this just a far-reaching hypothesis and do I need to just schedule a dang doctor's appointment?  Any advice is so appreciated.  Thank you!

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psawyer Proficient
psawyer
Posted

A minority of persons with celiac disease react to oats in a manner similar to the big three gluten grains, even if the oats are 100% pure. You may be one of them. I would try eliminating all oats for a while and see if your symptoms clear. If they do, you may need to avoid oats as well as wheat, rye and barley.

SLLRunner Enthusiast
SLLRunner
Posted
 

A minority of persons with celiac disease react to oats in a manner similar to the big three gluten grains, even if the oats are 100% pure. You may be one of them. I would try eliminating all oats for a while and see if your symptoms clear. If they do, you may need to avoid oats as well as wheat, rye and barley.

Exactly what I was going to say too. It's a shame, but true.

Irene Joanne Explorer
Irene Joanne
Posted

I can't eat oats at all- react the same as if I was glutened

squirmingitch Veteran
squirmingitch
Posted
 

I can't eat oats at all- react the same as if I was glutened

Ditto this for me. Can't touch the things. I loved oats too in my former gluten eating life. Oh well. They have gone the same way as gluten as far as I'm concerned. I'll never touch them again. Since going gluten-free I have never gotten glutened but I've gotten oated.

mayfly25 Newbie
mayfly25
Posted
  • Author

Thank you all.  I had just avoided oats in the past because of cross contamination issues but now that they have certified gluten free oats I thought I could have them.  I guess I'm just not meant to have any type of grain :(  But, it's better than feeling like I have the flu and seizing up.  Now for the de-tox.  Ugh!  Thanks again.

flowerqueen Community Regular
flowerqueen
Posted

Yes, I was about to say the same as others here. The thing is, even if the oats are certified as gluten free, in a minority of coeliacs, oats cause the same auto-immune response as gluten ALSO a word of warning here, quinoa can also cause the same auto-immune response, so you might want to tread carefully in that direction as well.

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frieze Community Regular
frieze
Posted
 

Thank you all.  I had just avoided oats in the past because of cross contamination issues but now that they have certified gluten free oats I thought I could have them.  I guess I'm just not meant to have any type of grain :(  But, it's better than feeling like I have the flu and seizing up.  Now for the de-tox.  Ugh!  Thanks again.

there are many other grains to chose from...

Irene Joanne Explorer
Irene Joanne
Posted
 

Yes, I was about to say the same as others here. The thing is, even if the oats are certified as gluten free, in a minority of coeliacs, oats cause the same auto-immune response as gluten ALSO a word of warning here, quinoa can also cause the same auto-immune response, so you might want to tread carefully in that direction as well.

Yup- I have the same reaction to quinoa

  • 2 weeks later...
CeliacMommaX2 Enthusiast
CeliacMommaX2
Posted

We suspect my 6 year old cannot tolerate gluten-free oats either... do we need to treat them just like wheat as far as CC issues?  Should I not cook oatmeal in pots that we prepare her food in?

flowerqueen Community Regular
flowerqueen
Posted

Hi CeliacMommaX2,

'Yes, you must treat oats like wheat in a situation where gluten free oats cause the same response. I would also not use pots or pans for your daughter, that you have cooked oats in, as there is always a chance that there are traces left in the pans after washing up.  It's better safe than sorry. 

squirmingitch Veteran
squirmingitch
Posted

I wouldn't be afraid to use a stainless steel pot that other things had been cooked in AS LONG AS YOU WASH THEM VERY WELL before making her food.

Gemini Experienced
Gemini
Posted
 

I wouldn't be afraid to use a stainless steel pot that other things had been cooked in AS LONG AS YOU WASH THEM VERY WELL before making her food.

Yup.....what she said!  In non-porous materials such as stainless steel or aluminum pans, a good washing is all you need to make the pan safe to use.

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      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
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