Gluten Reaction That Is Not Intestinal In Nature

[Beth in N]

I've had Celiac for several years.  I honestly don't remember when I was diagnosed...possibly one of my symptoms...crappy memory in the last couple years.  I did not have the classic symptoms before diagnosis and was honestly shocked at the diagnosis itself. 

 

There are lots of times I THINK I was glutened, but I don't know it for a fact, since I don't react the same way.  I will have a day when I sleep most of the day...can't stay awake for the life of me.  That has happened occasionally over the years.  It's happened a once a week for the last two - three weeks, yesterday being the most recent.  I slept even longer than usual, but in addition, had some strange sensations in my head.  I can't call it vertigo.  It was almost like a brain shiver, but not as severe.  Like dizziness that was only seconds and would go away, but happened repeatedly.  I checked my BP to make sure it wasn't low.  My heart rate was ok.  But I definitely didn't feel right in my head.  I stayed in bed, even after waking late yesterday afternoon because of it. 

 

Today I've been able to stay awake without a problem, but I'm getting that occasional quick dizzy feeling.  It is getting better though.  No new meds as of a full month ago. 

 

So I've assumed this is MY way of having a gluten reaction.  I refer to it as a "gluten coma" to family and they know what I mean.  I know regular allergies can worsen over time.  Can the same hold true with Celiac?  I know it isn't a true allergy, in the anaphylaxis sense of the word.  I've done reading about neuro symptoms and I'm nothing near what I read about ataxia.  Does anyone have any insight into this?  Anyone else experience similar symptoms?

 

Thanks in advance,

 

Beth in NC

[Takala]

Yes, celiac reactions can worsen over time, and they can be neurological in nature.  You may have to start eating more fresh foods you prepare yourself and fewer packaged ones, or figure out what common item is setting you off.  Also, please get checked for thyroid disease, esp. the thyroid antibodies and not just the hormone levels. 

[Beth in N]

Yes, celiac reactions can worsen over time, and they can be neurological in nature.  You may have to start eating more fresh foods you prepare yourself and fewer packaged ones, or figure out what common item is setting you off.  Also, please get checked for thyroid disease, esp. the thyroid antibodies and not just the hormone levels. 

Don't have Hashi's.  I take two thyroid supplements and levels are good now.  Both times I THINK it's been from eating out, but it's so hard to know.  I guess if I went without eating out for a month I'd know, but that would be so hard.  But each times it's been two days after eating out.  But I also have gluten eaters at home, but they have a dedicated spot.  They are really good about keeping gluten out of the kitchen, but I do clean up both areas. 

[Takala]

You described the weirdo brain sensations so incredibly accurately -  it almost feels like a mini- seizure.  I had this off and on for years until finally getting rid of them (knock on wood) about 7 years ago, had to go very, very clean, grainless, and elemental on my diet, and the last bad flareup I had was when I had a period of several days where I was absolutely stuck with getting cross contaminated -  I just won't ever do that sort of activity again, because the venue was not cooperative with the food needs.    I also get this if I take one of the brands of otc acid blockers, it just does not agree with my brain.    

 

Still, if you have any more problems I'd still talk to the doctors about this re the thyroid meds, esp. if you can't wake up. 

[Beth in N]

Mercy...which acid blocker?

[julissa]

you described perfectly how I feel on gluten. this was the worst symptom I had before my diagnosis. the dizziness out of no where during the day, in the middle of the night, with no rhyme or reason. this was affecting my life horribly. after giving up gluten, no dizziness. if I get glutened, the dizziness comes back. sometimes just a flash, and total brain fog.

[janpell]

I haven't been tested for Celiac but definitely react. I have been gluten free for two years (with random cheating) and never really clearing up my symptoms but went fully gluten free for the past six months or so. I get the pressure in my head too. For me, it is at the back of my head, with a very heavy feeling and I can hear/feel my blood pulse very strongly. It lasts from 10 - 30 seconds, a few to many times throughout the day - never painful but uncomfortable.  I haven't experienced it for about three months now but I did one more gluten test (rye, three weeks ago) and it came back within two days. It cleared in ten days from when the gluten was consumed.  Glad (but not glad) others are experiencing this same reaction from gluten. Helps to solidify what is going on with me without thinking it's all in my head (lol, sorry, couldn't resist that one.)

[Beth in N]

It does seem to ME that neuro symptoms are common on the second day.  When I have those days, I usually went out to eat two days before. 

 

Today at at ladies conference at church, I brought my own food.  But right after I put salt and pepper on my salad, I almost hit myself.  I know others, who were eating chicken salad sandwiches, had used the salt and pepper shakers.  I wonder if it is simple things like that which are getting me at restaurants. 

[psawyer]

Simply using a salt or pepper shaker in the normal fashion would not contaminate the contents of the shaker no matter what it was being shaken onto.

[Beth in N]

Simply using a salt or pepper shaker in the normal fashion would not contaminate the contents of the shaker no matter what it was being shaken onto.

But if there is gluten on the outside and I get it on my hands, can I not get glutened from it?

[psawyer]

That could be an issue if you are super-sensitive and are eating finger food. I suppose you could use a napkin or something to hold the shaker, but for me that level of possible contact is not an issue.

[YoloGx]

I am glad the awareness is growing that some of us are more sensitive than others. Neurological symptoms are often experienced by those of us who are simply more sensitive to gluten than others. It can be caused simply by not getting the nutrients you need to support your neurological system due to leaky gut in the intestinal villi.

 

In some cases, IMHO plus the indications of new studies, gluten can attack a variety of places in the body--not just the villi in the intestines. Certainly this has been my experience.

 

In either case, it could be an issue living in a household that has two gluten eaters. Any possibiilty you could ask them to eat their gluten away from the house?? Plus also consider keeping your towel and toiletries separate etc. and avoid hugging them if they might have gluten crumbs on their clothes, hair, skin etc. and then putting your hands to your face. I have taken to washing my hands frequently after I have gone out and come back into my house, no matter what. Assuming you are that sensitive it could make a big difference. Certainly it would be worth an experiment, yes?

[Beth in N]

I am glad the awareness is growing that some of us are more sensitive than others. Neurological symptoms are often experienced by those of us who are simply more sensitive to gluten than others. It can be caused simply by not getting the nutrients you need to support your neurological system due to leaky gut in the intestinal villi.

 

In some cases, IMHO plus the indications of new studies, gluten can attack a variety of places in the body--not just the villi in the intestines. Certainly this has been my experience.

 

In either case, it could be an issue living in a household that has two gluten eaters. Any possibiilty you could ask them to eat their gluten away from the house?? Plus also consider keeping your towel and toiletries separate etc. and avoid hugging them if they might have gluten crumbs on their clothes, hair, skin etc. and then putting your hands to your face. I have taken to washing my hands frequently after I have gone out and come back into my house, no matter what. Assuming you are that sensitive it could make a big difference. Certainly it would be worth an experiment, yes?

I'm more inclined to think it's eating out more than contamination at home, simply because it happens always a couple days after eating out.  I used to go months in between these gluten sleeping days but the last month or so, it's been once a week.  I need to discuss not going out with the family.  I just need a break occasionally on the cooking, due to my other issues.