24 /48 hour fever, vomitting and sweating galore

[Mathew]

I began with sickness and fevers randomly about 18 months ago after a bunch of tests it turns out i have celiacs desease as my dad did and so does my oldest daughter.

 

I am worried something else is going on as we clean surfaces and live in a 85% gluten free home to protect me and my daughter.

 

Even with the steps we take i keep getting ill. 

 

I guess my question is, does anyone else get servere vomitting and freezing cold sweats that lasts 24 hours. No sleep, no food and mass paranoia from gluten exosure?

 

I see some poeple experience nausia but i dont see much on the cold sweating and servere stomach flu like symptoms. These are always from cross contamination too, which is why im worried its something else.

[trents]

@Matthew,

Those are the exact symptoms I experience when I get a good dose of gluten. Some celiacs react the same way to the protein found in dairy and in oats as they do gluten. Are you still consuming either of these?

[Mathew]

1st of all thank you for replying. Hearing that others get the same symptoms as me is reasurring and both sad at the same time. I feel for you dude.

I still consume dairy yes and rarely oats if i do they are gluten free.

The last 3 times its happened there hasnt been a clear and obvious exposure.

The sweating is unreal and ive never felt colder. The next 4 days are just me in a daze, feel for u. Any advice, cos im about done.

[trents]

Can you elaborate on the 85% gluten free home to protect you and your daughter? What about the other 15%?

[Mathew]

24 minutes ago, trents said:

Can you elaborate on the 85% gluten free home to protect you and your daughter? What about the other 15%?

Sure, was a random number i know. My youngest and my wife have their own cupboard of treats. We all however eat gluten-free bread and bake with gluten-free ingredients.

They also have thier own none gluten-free frozen food thats cooked in the oven, never at the same time as gluten-free food. 

Again we wash surfaces and got all new utensils and new toaster etc

[trents]

Celiacs typically develop intolerance/sensitivity to non-gluten foods over time. After all, our immune systems are dysfunctional to begin with. Common among those are dairy, soy, oats and eggs but it could be anything. Also, common ingredients used in many gluten-free foods and recipes cause some of us distress, like xanthan gum.

Also, look into common associative medical problems like histamine intolerance/MCAS (Mast Cell Activation Syndrome), SIBO (Small Intestine Bacterial Overgrowth) and H. Pylori.

Have you recently had a CBC (Complete Blood Count) and a CMP (Complete Metabolic Panel) done? The fever is a concern. I don't get that when glutened.

Edited February 21, 2023 by trents

[Mathew]

Wow thank you mate, appreciate your time and advice. 

We used xamtham gum in some recipes yes. I dont know where to start honest. Im gonna get another app with GI and mention the conditions you menetioned.

First ive heard of celiacs becoming sensitive to none gluten food too. 

Its scary when it happens, and wrecks my mental health for weeks after, im already on ssris for depression, days like this make it all worse.

So Thank you

Mat

[cristiana]

1 hour ago, Mathew said:

I guess my question is, does anyone else get servere vomitting and freezing cold sweats that lasts 24 hours. No sleep, no food and mass paranoia from gluten exosure?

I see some poeple experience nausia but i dont see much on the cold sweating and servere stomach flu like symptoms. These are always from cross contamination too, which is why im worried its something else.

The only time I've vomited badly since I was a child was a couple of Christmasses ago when I was given a slice of glutenous cake.  The flour was Dove organic, not Dove gluten-free, and had been put in the wrong aisle at the supermarket.    Grrrrrrrr.

I had extreme chills, hot/cold, hot/cold and felt so dizzy I thought I'd pass out. My heart seemed to also be all over the place.

After I was sick I went to bed and slept quite well.  For a few days afterwards I felt a bit dizzy and had a bit of a sore stomach.

That was the first major hit of gluten I've had for several years.   Mild cross-contamination results in my getting gastritis like symptoms and feeling slightly nauseous.   But for years before that bad reaction to the cake I mentioned, chills and feeling sick were a major symptom after eating gluten and I noticed my face would also go bright red.

Over the past 18 months I've returned to eating oats (as in pure oats that are suitable for coelaics) but unfortunately I think I've been eating far too many recently and I'm feeling nauseous again.

 

Edited February 21, 2023 by cristiana

[Mathew]

Thank you for replying,  really appreciate that.  Sorry to hear of your struggles with this awful desease. 

I start to worry when it happens as its rarely the symptoms you read about / told by doctor.

Is there anyway to numb the fevers or ease the shivering / sickness?

[shadycharacter]

19 minutes ago, Mathew said:

Thank you for replying,  really appreciate that.  Sorry to hear of your struggles with this awful desease. 

I start to worry when it happens as its rarely the symptoms you read about / told by doctor.

Is there anyway to numb the fevers or ease the shivering / sickness?

Any chance you could be hypoglycemic when you get that reaction? 

[cristiana]

Don't worry ..... I've seen quite a few mentions of this reaction online, it does take a bit of searching, but we are defintely not alone. 

Personally, if I am ever glutened again like I was with that cake I'll be heading straight for the bathroom to be sick, and then to bed.  I can't imagine being able to do anything else.   

In the past I have found sipping ginger tea I find very soothing (a slice of root ginger in hot water) for the gut.

 

[Mathew]

Thank you mate, yeah im bed ridden alright for at least 24 hours. 

Bless you

[Mathew]

20 minutes ago, shadycharacter said:

Any chance you could be hypoglycemic when you get that reaction? 

Ive had tests for diabetes which came back fine

[cristiana]

Last week gluten-free cheesecake was on offer at my friend's birthday tea, and I felt really rough after that, and haven't felt at all good since.  I think I was glutened, a very small amount, not enough to vomit, but to feel sick on and off for days.  I try not to eat out anymore because this nearly always seems to happen to me.

Yet I have friends who have coeliac disease who eat out without problems.  It seems to me that some of us are just more sensitive to gluten than others.

Have you been eating out?

 

[Mathew]

1 minute ago, cristiana said:

Last week gluten-free cheesecake was on offer at my friend's birthday tea, and I felt really rough after that, and haven't felt at all good since.  I think I was glutened, a very small amount, not enough to vomit, but to feel sick on and off for days.  I try not to eat out anymore because this nearly always seems to happen to me.

Yet I have friends who have coeliac disease who eat out without problems.  It seems to me that some of us are just more sensitive to gluten than others.

Have you been eating out?

 

No thats the thing, im worried its something else as i dont see many reports of the cold sweating i get when vomitting and like i said we have been careful, its either something else entirley, or cross contamination, which seems cant be avoided. Or in my case struggling to avaoid it seems

Back to the doctors i guess, just when ya think you have cracked it.

[cristiana]

One thing you might wish to do - sorry if this has been suggested already - is to keep a food diary of everything you are consuming, including drinks and medication, just to see if there is any pattern emerging. 

I note you are on SSRIs and I've had a quick google for you on NHS.  I see that sometimes they can cause some of the symptoms you describe.  

Have a read and see what you think.

https://www.nhs.uk/mental-health/talking-therapies-medicine-treatments/medicines-and-psychiatry/antidepressants/side-effects/

I think it is a really good idea you see your doctor soon about this as it could be related to your meds?   Don't do anything without checking with them first, as obviously on this site we aren't doctors and are not qualified to give out advice on taking medication.

 

 

 

Edited February 21, 2023 by cristiana

[Mathew]

3 minutes ago, cristiana said:

One thing you might wish to do - sorry if this has been suggested already - is to keep a food diary of everything you are consuming, including drinks and medication, just to see if there is any pattern emerging. 

I note you are on SSRIs and I've had a quick google for you on NHS.  I see that sometimes they can cause some of the symptoms you describe.  

Have a read and see what you think.

https://www.nhs.uk/mental-health/talking-therapies-medicine-treatments/medicines-and-psychiatry/antidepressants/side-effects/

I'm not a doctor though, so please, whatever you do, take medical advice if you think this could be the problem. 

 

Thank you for your advice, i will begin documenting my food again. I have thought it may be ssri but doc doesnt seem to think so. Im going to call them tomorrow for what its worth.

Seems to be every 6 weeks or so, like im fine for a good few weeks and them bang all the same symptoms. Im assuming its gluten because its the symptoms ive had Sinse diognosed. Theres every chance i have celiac and summat else.

[cristiana]

 

TBH, since my diagnosis I find my own symptoms come and go. 

I often google this forum for help, find an old thread that is really helpful, packed full of relevant advice to my current set of symptoms, and then find that no wonder it is so helpful, as I started the old thread in question!  Just goes to show that gluten must also affect my memory!

Do keep us posted.  

Edited February 21, 2023 by cristiana

[shadycharacter]

3 hours ago, Mathew said:

Thank you for your advice, i will begin documenting my food again. I have thought it may be ssri but doc doesnt seem to think so. Im going to call them tomorrow for what its worth.

Seems to be every 6 weeks or so, like im fine for a good few weeks and them bang all the same symptoms. Im assuming its gluten because its the symptoms ive had Sinse diognosed. Theres every chance i have celiac and summat else.

Found an old discussion on another site about similar symptoms to yours. The original poster eventually got some relief from b12. I hope you find something that helps. 

https://healthunlocked.com/glutenfreeguerrillas/posts/130589691/shock-symptoms-when-badly-glutened-do-you-have-them

[Mathew]

15 hours ago, shadycharacter said:

Found an old discussion on another site about similar symptoms to yours. The original poster eventually got some relief from b12. I hope you find something that helps. 

https://healthunlocked.com/glutenfreeguerrillas/posts/130589691/shock-symptoms-when-badly-glutened-do-you-have-them

Oh you lovely person. Thank you. Just got back from docs had anti sickness injection. Thank for this support. Really appreciate it 🙏 

 

Mat

[shadycharacter]

9 hours ago, Mathew said:

Oh you lovely person. Thank you. Just got back from docs had anti sickness injection. Thank for this support. Really appreciate it 🙏 

 

Mat

Last time I got really sick for a couple of days I had eaten gluten free cinnamon buns made with wheat starch. I've avoided wheat starch since and never been that sick again. Could be a coincidence, I don't know, but sometimes it's not enough that a product is labeled gluten free. The allowed 20 ppm (varies between countries) is too much for some. 

[Russ H]

On 2/21/2023 at 7:09 PM, Mathew said:

1st of all thank you for replying. Hearing that others get the same symptoms as me is reasurring and both sad at the same time. I feel for you dude.

I still consume dairy yes and rarely oats if i do they are gluten free.

The last 3 times its happened there hasnt been a clear and obvious exposure.

The sweating is unreal and ive never felt colder. The next 4 days are just me in a daze, feel for u. Any advice, cos im about done.

I used to react very badly to dairy. It was a delayed reaction and took at least 24 hours to come on, which made it difficult to narrow down what was causing it. I would be bed-bound for a couple of days with cold sweats, bloating and burping and diarrhoea - much worse symptoms than if I eat gluten. I have no trouble with dairy now. I can't remember exactly how long it took before I could eat dairy. I am 18 months in now. Might be worth excluding dairy to see if it helps.

[CMCM]

For much of my life, despite having a mom with very severe celiac disease (she found out what she had when I was 17), I always thought my digestive issues were due to dairy.  I had dairy problems from infancy, and have not really liked to eat much dairy my entire life, I instinctively avoided it.  My mom was violently sick any time she got an accidental exposure, and I remember had horribly sick she had been when I was young, before her diagnosis.  I wasn't like that, so I figured I had escaped the celiac curse and my problem was dairy.  I didn't get diagnosed celiac until 2009 when I was 60, but I also tested (Enterolab) highly sensitive to the dairy protein casein.  I was strictly gluten-free from about 2009 to 2011, and also mostly eliminated dairy as well, and I do best with of course no gluten and also no dairy.  So I stayed "mostly" gluten-free since 2011, but got  lax with eating gluten in about 2019 to 2020, and I got increasingly sicker with odd things I won't go into here, but I got it together again in early 2021 and have been strictly gluten-free for  over 2 years now.  As for dairy, I mostly avoid it but found after a year of no dairy that I could allow back a tiny bit....for me, that's in my daily cappuccino (I have a machine to make my own) in which I steam whip half and half to put in the coffee.  I measured to find out how much is in each daily cup, and it's 2 Tablespoons worth.  I do fine with that although occasionally for no reason it will give me a stomach ache.  If I have more than that, I'll have bloating and sometimes a stomach ache and worse.  I couldn't really tolerate 2 cappuccinos in one day, for example.  Ice cream kills me, also yogurt.   So I guess I'd say I can tolerate very small amounts of dairy but never very much.  Reacting to the casein is different from reacting to the lactose part of milk, apparently, at least for me that's true.

[SkDubs]

On 2/21/2023 at 4:36 PM, Mathew said:

No thats the thing, im worried its something else as i dont see many reports of the cold sweating i get when vomitting and like i said we have been careful, its either something else entirley, or cross contamination, which seems cant be avoided. Or in my case struggling to avaoid it seems

Back to the doctors i guess, just when ya think you have cracked it.

I get VIOLENT vomiting and diarrhea. The cold sweats are brain-numbing. The nausea is unbearable. Lasts about 20 hours. Checked myself into ER last time it happened and I was in sepsis! It’s happened 6 times in last two years. I am still waiting on final diagnosis but all signs are pointing to celiac currently. It is the worst thing I have ever experienced. I thought I was going to die. 

[Russ H]

2 hours ago, CMCM said:

Reacting to the casein is different from reacting to the lactose part of milk, apparently, at least for me that's true.

Also, coeliac disease causes a 'leaky gut' so milk proteins can get into the gut wall. I am assuming that is what happened to me and why I can now tolerate milk as my gut has healed.