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kam00096

Glutened or something else?

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Despite being gluten free for 7 months I'm still having loads of health issues. No idea if they're all related to celiac or not but I've had a strange thing happen a few times this month and am wondering if it is down to gluten from somewhere. Basically it feels like a monster panic attack or hypo... once every few weeks all of a sudden I'll get really shaky and dizzy/ off balance, then I get full body sweats and then nausea. It usually passes quite quickly but then afterwards I feel exhausted and foggy and my joints ache like crazy.

I don't think it is panic attacks as I've had them in the past and they didn't feel like this, plus my anxiety isn't bad at the moment and it happens when I'm feeling fine. Don't think it's actually a hypo as sometimes it happens after meals. Before I went gluten free I felt like this pretty solidly most days and now it's only on odd occasions. 

It happened today a couple of hours after I ate gluten free oats and I'm wondering if I maybe need to cut them out to. Just wondered if anyone has experienced anything similar? 

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Sounds like you got gluten ed to me, Question what brand of oats? Alot of so called gluten-free oats in America use a so called mechanical separation to separate wheat grains from the oats during processing. Not exactly gluten free and causes hard to test for hot spots in batches where there is higher gluten content. I would say change to a true gluten-free brand or drop the oats all together, Perhaps change to a quinoa, or rice porridge, or make one with coconut flour or sorghum flour if you must have a hot porridge like cereal. I found during my initial transition before the carb issues that making overnight crock pot rice porridge substituted for oatmeal very well and you can flavor it fruits that melt into it when you stir and serve.  It might even be a case of you like some other celiacs also react to oats in general.

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After six months, your doctor should be ordering a celiac antibodies follow-up test to determine whether or not your antibodies are falling (implying that you are gluten-free compliant).  They may still be elevated but a downward tend is what they are looking for.  Celiac symptoms can wax and wain.  It is so frustrating!  Lab tests can help you figure it out. 

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

Giving up oats is a good suggestion too.  Celiac experts recommend avoiding them for at least six months and then introducing them into your diet.   I would strongly recommend only certified gluten-free oats.  

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20 hours ago, Ennis_TX said:

Sounds like you got gluten ed to me, Question what brand of oats? Alot of so called gluten-free oats in America use a so called mechanical separation to separate wheat grains from the oats during processing. Not exactly gluten free and causes hard to test for hot spots in batches where there is higher gluten content. I would say change to a true gluten-free brand or drop the oats all together, Perhaps change to a quinoa, or rice porridge, or make one with coconut flour or sorghum flour if you must have a hot porridge like cereal. I found during my initial transition before the carb issues that making overnight crock pot rice porridge substituted for oatmeal very well and you can flavor it fruits that melt into it when you stir and serve.  It might even be a case of you like some other celiacs also react to oats in general.

It is not quite true that a lot of oats are contaminated or companies are using mechanical separation instead of dedicated fields for growing oats.  Most use dedicated fields and the oats are very safe. I have been eating gluten-free oats for 11 years, am very sensitive to gluten but do not have an issue with gluten-free oats. I would not trust Cheerios but you can find safe oats easily.....much more so than when I was first diagnosed.

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20 hours ago, kam00096 said:

Despite being gluten free for 7 months I'm still having loads of health issues. No idea if they're all related to celiac or not but I've had a strange thing happen a few times this month and am wondering if it is down to gluten from somewhere. Basically it feels like a monster panic attack or hypo... once every few weeks all of a sudden I'll get really shaky and dizzy/ off balance, then I get full body sweats and then nausea. It usually passes quite quickly but then afterwards I feel exhausted and foggy and my joints ache like crazy.

I don't think it is panic attacks as I've had them in the past and they didn't feel like this, plus my anxiety isn't bad at the moment and it happens when I'm feeling fine. Don't think it's actually a hypo as sometimes it happens after meals. Before I went gluten free I felt like this pretty solidly most days and now it's only on odd occasions. 

It happened today a couple of hours after I ate gluten free oats and I'm wondering if I maybe need to cut them out to. Just wondered if anyone has experienced anything similar? 

Have you had your blood sugar checked recently? Those symptoms are very common to those with untreated diabetes and those with celiac disease are at higher risk for developing it.  I had blood sugar problems before I was diagnosed but they all went away after being gluten-free for awhile. 

At 7 months gluten-free, you should be able to handle gluten-free oats...unless you are one of the small percentage who cannot tolerate those either.  Maybe try them again a couple of times and watch for symptoms afterwards?  That is the only way you'll be able to tell. I would write down everything you are eating daily so if this happens again, you can try to see if you ate the same foods when it occurs.  Don't worry....as more time goes on, you'll be healing and feel better.

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Thanks for the advice. I've been convinced it's something else with my blood sugar or thyroid or something but bloods are all fine. Am just gutted that despite being really pretty strictly gluten free I'm still not feeling great at all. The oats were definitely gluten free and I've had gluten-free oatcakes before but will keep an eye on reactions from now on. It's so difficult when there doesn't seem to be any correlation between things! 

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Also candida albicans can set into the intestines to those with Celiacs, and cause a lot of issues. I tested high (blood test antigen testing), and after going on a protocol of a rotation of different herbs (garlic, oregano oil, grapefruit seed extract, etc.) and keeping sugar intake down, it cleared up and I felt better than I had in decades.  I would suggest working with a naturopath on this, general docs are not open to even looking at these things.

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