Severe Chills

[GlutenFreeKitty]

Hey everyone - 

I went gluten free in 2012 and oh what a journey it has been! I went gluten free for six months prior to my gluten sensitivity diagnosis. Because I was off gluten my doctor said that the diagnosis for celiac disease would not be accurate. All I know is that I am good if I "stick with the program". 

I have never been real beer drinker but my roommate enjoys beer often. I have "cheated" by drinking an occasional Black and Tan. Yesterday I had half of a kraft beer he was drinking, "Lagunitas" which he bought at Kroger's. I had a major, full-blown gluten reaction which hit me like a freight train. I was sitting on the couch and one minute I was good, the next seriously ill. Does anyone else get extreme chills? This happened to me once before when I had eaten wings (which the waitress told me were gluten free but contained flour and soy). I thought I was going to have to call 9-1-1! The chills were so bad I wound up in bed with three blankets. I lost a whole night of my life last night. Add to the chills, vomiting and a fever. It was all quite unpleasant.

Two answer goals for this post:

1). Do Kraft beers cause a stronger gluten reaction? I am NEVER drinking beer again but, I am curious. My roommate thought they did because they contain more barley and rye.

2). Does anyone else get the chills as a gluten reaction? I am scheduling a doctor's appointment soon and will probably need a referral to a practice specializing in diet particularly gluten-free. 

I was pretty scared and sick last night. I am sticking with the program now, no more cheating.

~ GFK

[Jmg]

29 minutes ago, GlutenFreeKitty said:

1). Do Kraft beers cause a stronger gluten reaction? I am NEVER drinking beer again but, I am curious. My roommate thought they did because they contain more barley and rye.

Hi, welcome, and Bad Kitty for drinking that beer 

Some beers have a higher gluten content than others. I've seen some say that they could drink a corona for instance which is lower than some. There's no way I'd do this however. There's plenty of gluten-free options available if you want a beer, or go for cider instead which is a better bet imo. 

33 minutes ago, GlutenFreeKitty said:

2). Does anyone else get the chills as a gluten reaction? I am scheduling a doctor's appointment soon and will probably need a referral to a practice specializing in diet particularly gluten-free. 

Not as an immediate reaction, at least not yet. However gluten did mess around with my heat sensitivity. I used to feel very cold, for years I'd wear 2 pairs of socks, ridiculous amounts of layers of clothing etc. That's one of the odd things which had become a part of me and which went when the diet changed. 

Hope you're feeling better soon

 

[cristiana]

Hello Kitty

Well I had chills in my first year post diagnosis, I remember two specific instances. On one occasion I was walking home along a path eating licorice allsorts - a type of English sweet - because I had read licorice had iron in it and it was good for anemia.  Good excuse!  I remember feeling chills and my shins itched.   Got home and checked the ingredients and they contained gluten.  Another time I had chills after eating out at a hotel. Those are the two occasions I specifically recall but I do remember looking it up on this website once or twice. 

I have just typed in 'chills' and 'celiac' in google and I would say there is quite a bit of anecdotal evidence to show this can happen.

Pre-diagnosis I also had extreme chills, diarrhea and stomach pain within an hour of eating broccoli of all things. It happened on three separate occasions.  The chills would not stop until a few hours after it had passed through my system.  So perhaps that was another intolerance kicking in?  I still haven't gone back to eating broccoli, I can't face it.

Perhaps you could let us know if this becomes a feature of future glutenings (hopefully you won't have too many more episodes!) as I think it would be helpful for others to know.

 

 

[Jmg]

This had reminded me of this site: http://gluteninbeer.blogspot.co.uk/ where someone is actually testing different beers to find out their gluten content. You can see from the list about halfway down the page how different beers vary. Not many craft beers amongst them though. 

If the chills persist meanwhile consider a leather jacket...

 

[Kurasz]

Beer is the worst thing anyone with celiacs can drink. Thats what led me to the gluten free diet. One drink of beer and i'll be in the bathroom for 12 hours puking with the hot and cold sweats. I get so cold i have to sit in the shower and warm up every time i throw up.

[Patty harrigan]

On 9/4/2016 at 10:55 AM, GlutenFreeKitty said:

Hey everyone - 

I went gluten free in 2012 and oh what a journey it has been! I went gluten free for six months prior to my gluten sensitivity diagnosis. Because I was off gluten my doctor said that the diagnosis for celiac disease would not be accurate. All I know is that I am good if I "stick with the program". 

I have never been real beer drinker but my roommate enjoys beer often. I have "cheated" by drinking an occasional Black and Tan. Yesterday I had half of a kraft beer he was drinking, "Lagunitas" which he bought at Kroger's. I had a major, full-blown gluten reaction which hit me like a freight train. I was sitting on the couch and one minute I was good, the next seriously ill. Does anyone else get extreme chills? This happened to me once before when I had eaten wings (which the waitress told me were gluten free but contained flour and soy). I thought I was going to have to call 9-1-1! The chills were so bad I wound up in bed with three blankets. I lost a whole night of my life last night. Add to the chills, vomiting and a fever. It was all quite unpleasant.

Two answer goals for this post:

1). Do Kraft beers cause a stronger gluten reaction? I am NEVER drinking beer again but, I am curious. My roommate thought they did because they contain more barley and rye.

2). Does anyone else get the chills as a gluten reaction? I am scheduling a doctor's appointment soon and will probably need a referral to a practice specializing in diet particularly gluten-free. 

I was pretty scared and sick last night. I am sticking with the program now, no more cheating.

~ GFK

I too had severe chills that went on for Three hours with vomiting. I did go to the ER where they monitored my blood pressure and heart rate. Also gave me an IV to keep me hydrated and a medication to stop vomiting. My reactions are getting worse every time. I am extremely diligent and had dinner at a restaurant where the general manager is a celiac too. I’m feeling like they is no safe place outside of my home. 

Chills where extreme...uncontrolllable and I was wrapped in warming blankets. Chills are a new addition to the horror?

 

[Ennis-TX]

6 hours ago, Patty harrigan said:

I too had severe chills that went on for Three hours with vomiting. I did go to the ER where they monitored my blood pressure and heart rate. Also gave me an IV to keep me hydrated and a medication to stop vomiting. My reactions are getting worse every time. I am extremely diligent and had dinner at a restaurant where the general manager is a celiac too. I’m feeling like they is no safe place outside of my home. 

Chills where extreme...uncontrolllable and I was wrapped in warming blankets. Chills are a new addition to the horror?

 

Older post, please check dates, but to address your question the symptoms many of use have with a gluten exposure seem to always evolve especially if we have a good amount of time between them. It leads to the complexity of this disease and knowing when you were truly glutened or if it was a intolerance issue, or something else.
Chills, back before my diagnosis I always was feeling cold in the house, but I also always was sweating and had very oily skin back then. I have not noticed it any more pronounced during gutening since going gluten free, but I find I tolerate the cold much better and hate the heat now.  Last confirmed major gluten exposure I had caused me to lose motor control and collapse in my doorway vomiting violently unable to move on the floor for hours. This was over a year ago, and I no longer eat out aside from the 2 places I trust, and I always bring my nima sensor and test anything I do not trust now days.

[Patty harrigan]

On ‎10‎/‎29‎/‎2017 at 6:34 PM, Ennis_TX said:

Older post, please check dates, but to address your question the symptoms many of use have with a gluten exposure seem to always evolve especially if we have a good amount of time between them. It leads to the complexity of this disease and knowing when you were truly glutened or if it was a intolerance issue, or something else.
Chills, back before my diagnosis I always was feeling cold in the house, but I also always was sweating and had very oily skin back then. I have not noticed it any more pronounced during gutening since going gluten free, but I find I tolerate the cold much better and hate the heat now.  Last confirmed major gluten exposure I had caused me to lose motor control and collapse in my doorway vomiting violently unable to move on the floor for hours. This was over a year ago, and I no longer eat out aside from the 2 places I trust, and I always bring my nima sensor and test anything I do not trust now days.

 

[Patty harrigan]

Feels like going from jail to solitary. Purchased a Nima yesterday. Thanks for your reply.

[Kurasz]

This is an old Post of mine. I have actually found out exactly why I got so severely I'll. Not only do I have Celiac's, I also have colitis, leaky gut, and a hiatial hernia. The holes in my intestines were leaking in to my body and causing the severe illness and chills. Now 2 years later, my intestines have healed and I no longer get the extreme illness I was getting 2 years ago. But my diet consists of grass fed meats and veggies grown by the Amish. I do not go to grocery stores.

[Patty harrigan]

I had extreme chills with vomiting last time I was  glutened. It was horrible. I thought my bones would break.

[Wheatwacked]

I've been cold intolerant all of my life and it has improved since becoming gluten free. I have to take hot showers to raise my core temperature to stop shivering. I was following Ratso Rizzo's ("Midnight Cowboy") advice when I moved to Florida.

2 hours ago, Kurasz said:

I also have colitis, leaky gut, and a hiatial hernia. The holes in my intestines were leaking in to my body and causing the severe illness and chills.

All, I believe are complications from eating wheat and gluten. My son was diagnosed Celiac in 1976. My father and brother died after intestinal surgery; failure to heal due to leaky gut. They said dad's intestine was like lace, sutures wouldn't heal. Both cause of deaths were officially listed as heart failure. I have an umbilical hernia that I got one night watching TV in bed while bloated and I coughed. A small balloon popped out of my belly button! That is when I stopped being in denial. 

[cristiana]

This is an old thread, but as I contributed a while back on this thread, for anyone interested I can definitely confirm that chills (hot, cold, sweats, plus dizziness) is how I react to major gluten exposure (as opposed to cross contamination on a small scale which gives me gastritis like pain).

I've now had this happen three times - once when I ate a pork pie which was given to me by mistake, another time when a pizza restaurant served me the wrong dish, and just last night when someone gave us a cake which they thought was gluten-free but wasn't.  British readers please note:  Not all Dove flour is gluten free!

This was the worst incident to date but it definitely proved that chills are a symptom.  And now I can also add vomiting to the list, a new one. 😓  

I think my symptoms are now worsening in severity.

[DJFL77I]

stop eating at restaurants..

 

[Scott Adams]

On 12/19/2020 at 3:11 AM, cristiana said:

This is an old thread, but as I contributed a while back on this thread, for anyone interested I can definitely confirm that chills (hot, cold, sweats, plus dizziness) is how I react to major gluten exposure (as opposed to cross contamination on a small scale which gives me gastritis like pain).

I've now had this happen three times - once when I ate a pork pie which was given to me by mistake, another time when a pizza restaurant served me the wrong dish, and just last night when someone gave us a cake which they thought was gluten-free but wasn't.  British readers please note:  Not all Dove flour is gluten free!

This was the worst incident to date but it definitely proved that chills are a symptom.  And now I can also add vomiting to the list, a new one. 😓  

I think my symptoms are now worsening in severity.

Be sure to re-check your diet and make sure it is 100% gluten-free. Eating out can definitely lead to cross-contamination.

[Pammie123]

On 1/14/2018 at 7:27 AM, Patty harrigan said:

I had extreme chills with vomiting last time I was  glutened. It was horrible. I thought my bones would break.

I just started the four weeks of having the equivalent of 4 pieces of bread before my test. And OMG the last 3 days, approx 4 hours after a gluten lunch the chills start and last for about an hour and a half. Last night as soon as it started, and it’s sudden, I jumped in a hot shower hoping it would help but no, I shivered and shook for 20 minutes in that shower. Got out put on three layers of clothing and just waiting for it to subside, my hands were shaking so much I couldn’t properly hold a glass of water. As soon as the chills went, as quickly as they came, the vomiting started, just the fluids I had been sipping on during the chills. I haven’t seen any mention what happens to me straight after……. I have a massive hot flush, I sweat so much the tshirt im wearing is soaked, I go from freezing teeth chattering cold to soaked in sweat like it’s a 40 degree night with no A/C. Has anyone else had this?

[trents]

1 hour ago, Pammie123 said:

I just started the four weeks of having the equivalent of 4 pieces of bread before my test. And OMG the last 3 days, approx 4 hours after a gluten lunch the chills start and last for about an hour and a half. Last night as soon as it started, and it’s sudden, I jumped in a hot shower hoping it would help but no, I shivered and shook for 20 minutes in that shower. Got out put on three layers of clothing and just waiting for it to subside, my hands were shaking so much I couldn’t properly hold a glass of water. As soon as the chills went, as quickly as they came, the vomiting started, just the fluids I had been sipping on during the chills. I haven’t seen any mention what happens to me straight after……. I have a massive hot flush, I sweat so much the tshirt im wearing is soaked, I go from freezing teeth chattering cold to soaked in sweat like it’s a 40 degree night with no A/C. Has anyone else had this?

I'm not sue it's in the interest of your own health and safety to continue the gluten challenge in order to get tested. I think you know what you need to know by now. Regardless of whether you have celiac disease or NCGS you need to totally avoid gluten.

[Pammie123]

49 minutes ago, trents said:

I'm not sue it's in the interest of your own health and safety to continue the gluten challenge in order to get tested. I think you know what you need to know by now. Regardless of whether you have celiac disease or NCGS you need to totally avoid gluten.

Thank you, that is exactly how I feel, I will be contacting my gastroenterologist today for guidance 

[trents]

Yes. You are going to wind up in the ER if you continue with the gluten challenge.

[cristiana]

6 hours ago, trents said:

Has anyone else had this?

Just to say you are describing my own reaction to gluten when I eat gluten in any sizeable quantity (for example, a slice of cake, or when I was served the wrong pasta at a restaurant).  I second @trents advice, and definitely speak to your gastroenterologist asap.   Let us know how you get on.  

Edited June 8, 2023 by cristiana

[Pammie123]

6 hours ago, trents said:

Yes. You are going to wind up in the ER if you continue with the gluten challenge.

I can’t get an appointment until 6th July so…. I’m going to be gluten free until then. Went completely GFtoday and so far so good and it’s almost 6pm. Thanks everyone it’s so good speaking to others