Pure Oats causing Neurological Problems?

[cristiana]

I have just tried certified gluten-free pure oats again.  I last tried them in November and had a burning sensation in my gut for some weeks so did not want to eat them for a while before trying again.  So I had hoped now I am nearly two and a half years into the gluten-free journey I might be able to eat them again but I am in pain, yet again ,so have decided that I am probably one of those celiacs for whom avenine is a problem and I intend to steer well clear of them in future.  Very disappointing for someone with Scottish ancestry!

One thing I would be very interested to know is if anyone who has a problem with oats, as a celiac, has also experienced neurological symptoms after eating them.  I have just started a new tingling symptom in my upper thigh and don't know whether to pin this on the oats or sciatica, as in fact I have been doing some heavy lifting in the last couple of days.

Many thanks.

[squirmingitch]

Hi Christiana,

After 3 years strict gluten-free last December I began using cert. gluten-free oat flour in a bread recipe. We had not been fond of the gluten-free breads our local stores sold so we had not eaten that very often for the 3 years. The bread I made was delicious & after pretty much not having any bread for 3 years we went nuts eating bread. We had sammiches often, toast with breakfast, garlic toast, cheese toast, bread & butter, we had bread every time we could work it in. It was so nice to be able to just have a sammich for lunch & not have to cook!  When I began to make this gluten-free bread with the oat flour; slowly all my celiac symptoms began to return, 1 by 1. However, I did not associate it with the oat flour. I was going crazy nuts trying to figure out where the gluten was coming from. I must back up a bit & explain that I have dh (celiac rash) & didn't really have the "D" - once every 4 - 6 weeks maybe. So it's not like I have this immediate reaction & run to the bathroom like most people do. It began with me getting dizzy. The dizzy comes & goes in waves getting stronger with continued exposure. Then the pounding heart beat that is like drums in my ears, then 1 by 1 symptoms returned. Mild migraines began, red rimmed eyes, twitching nerves in my eyelid, brain fog, burping & then elevated to belching, bloat, then severe bloat, hands & feet getting that needles feeling, gasssssssssssss, blood pressure began rising, that super weird buzzing feeling inside my body - it keeps you awake - sort of like restless leg syndrome but it involves the entire body - sort of like being on speed, mucus in eyes, blepharitis, then the bone & muscle & nerve pain set in & began to make itself known and lastly was the "D" with those horrid, horrid screaming cramps AND the rash flared up. I had always thought the rash would be my first sign of a glutening. I was wrong.

We have a totally gluten-free household, never eat out, & are religious about being careful with making sure everything is gluten-free. It took time for all the symptoms to build up but I was aware & was looking for the source of gluten. I could not figure out where it was coming from. I even tried to convince myself it was all in my head - psychosomatic. But it wasn't. Then it dawned on me that it had to be the oats. Quit the bread making, threw out the oat flour, cleaned everything & began anew minus oats. I went back to normal -- all symptoms gone. Then our store began carrying Udi's gluten-free bread. We tried it & we loved it!!!!! We were eating an average of 3 to 4 loaves per week & also having Glutino cookies. A few weeks in & here we go again -- symptoms returning again . Now why? Where is the gluten coming from???? Not eating anything with oats so what is it?????? Then a lightbulb went off in my head. Udi's is made in a gluten-free facility where they also make things containing gluten-free oats. Since it's a gluten-free facility & they use gluten-free oats do they worry about the oats cc'ing the rest of the products???? I called them. The lady I spoke with said they don't clean the lines because everything in the facility is gluten-free including the oats. She told me there is certainly cc with the oats going on. So not only the Udi's bread is cc'd with gluten-free oats but also Glutino products since they are made in the same facility.

Just my experience, your mileage may vary.

[cristiana]

Thank you so much!   I am definitely going to look into this.  Since going gluten-free I  have been increasingly reliant on products that probably share lines with oats but have never given it a thought!  The gut pain I have gone through the two or three times I have eaten pure oats since DX lasts a long while so what on earth made me eat them again the other day?    I wouldn't sit down and eat a PIzza Hut pizza or a MacDonalds burger so why would I sit down and eat loads of flapjack and biscuits with oats in them knowing that for me they cause the same sort of pain that I was experiencing at DX?

Your symptoms are so similar to mine I am sure I have the same problem, it is extremely good of you to have taken the time to list them all.   

If anyone else is reading this and has gone through similar experiences please do post, it seems to me that squirmingitch has made an important point and one that could help a much wider audience, and also might help researchers on the continuing question of oats in the celiac diet.   

Thanks again, squirmingitch.

 

[squirmingitch]

You're welcome. I have more to add & I forgot to list some of the symptoms -- there are so many.

I will have to get around to typing up a long post when I get a chance - I'm not a speed typist.

In the meantime, you might be interested in reading this post I made when I was questioning what was getting me the second time after I had quit the oat flour bread.

I will also need to add to that when I get a chance as I have heard back form a couple more manufacturers. There was more to that thread but it seems to have been cut off when the re-vamp of the site was done?????

[cristiana]

I shall be following the subject with great interest.   Re: symptoms I have a lot of tingles, twinges and buzzes - some days with this electricity I am sure if they wired me up I could power the Christmas Lights in London's Regent Street.  I have had all sorts of tests since DX including diabetes, MRIs, thyroid.   Apart from a DX of ulnar compression  I have never found out why I have these waxing and waning things happening, maybe this is why.   Thanks again for all your help

[squirmingitch]

I was mistaken about that post -- part of it wasn't lost with the re-vamp. I'm having brain fog again BAD. Will explain why I think that's going on when I get a chance. Back to the subject at hand...... I had made another thread & I found it now so here's the link:

[cristiana]

Thanks so much for posting  thread.   It seems to me there could be a need for manufacturers to note that they are Oat Free, along the ever-growing list of symbols! 

I am too now experiencing bad headaches, something I thought I had left behind.   Yuck!

[squirmingitch]

You're welcome. I don't think we will ever see an oat free designation. I don't know what ranking oats have on the allergen list but i don't imagine they're very high up there.