0
Beth in N

Gluten Reaction That Is Not Intestinal In Nature

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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. 

Share this post


Link to post
Share on other sites

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. 

Share this post


Link to post
Share on other sites

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.  :angry:   I also get this if I take one of the brands of otc acid blockers, it just does not agree with my brain.  :ph34r:   

 

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.  :(

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.)

Share this post


Link to post
Share on other sites

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. 

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   11 Members, 2 Anonymous, 403 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com