Jump to content

  • 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

Oat Flour making me sick?

mayfly25

Recommended Posts

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!

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

Celiac.com Sponsor (A8-M):


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.

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

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    2. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    3. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    4. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
    5. Scott Adams
      - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,911
    • Most Online (within 30 mins)
      7,748
    AngieMcK24
    Newest Member
    AngieMcK24
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.