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Rpm999

Anybody Ever Have This Symptom?

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i have no clue if it's because of celiac or not, but i feel like i have the chills deep down in my nerves, but it feels like a weak, sickly type of chill, yet i feel extremely sensitive to heat and have both at the same time, i can be taking a hot shower or have the heat blowing on me, yet i still have that deep shivering, but i can barely even tolerate the heat so it drives me nuts! anybody ever struggle with this? people are shocked that i don't have a fever too, because my head always feels like a burning hot fever, yet i never have one! i guess that's why i'm real sensitive to heat, because for whatever reason my body feels extremely warm and flush, which is just as uncomfortable as the cold feeling

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Have you checked your thyroid? I am looking into mine right now, taking my basal temp every morning. I get those deep in my bones chills but not the hot thing. I am always cold.

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i have no clue if it's because of celiac or not, but i feel like i have the chills deep down in my nerves, but it feels like a weak, sickly type of chill, yet i feel extremely sensitive to heat and have both at the same time, i can be taking a hot shower or have the heat blowing on me, yet i still have that deep shivering, but i can barely even tolerate the heat so it drives me nuts! anybody ever struggle with this? people are shocked that i don't have a fever too, because my head always feels like a burning hot fever, yet i never have one! i guess that's why i'm real sensitive to heat, because for whatever reason my body feels extremely warm and flush, which is just as uncomfortable as the cold feeling

I'm taking a guess here, but your thyroid may be the cause for your temperature variations.

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...i feel extremely sensitive to heat and have both at the same time, i can be taking a hot shower or have the heat blowing on me, yet i still have that deep shivering ... anybody ever struggle with this? people are shocked that i don't have a fever too, because my head always feels like a burning hot fever.

Hi RPM999,

I had this temperature issue as well. I would feel like there was flaming needles and fire under my skin but my temperature was always 98.6F, quite infuriating. This was accompanied by a chill that couldn't be warmed away. I felt like my body couldn't sense or adjust it's own temperature, but it's a nerve thing I think. Being gluten free has largely made this gone away. Being glutened can cause it to return. Gluten is my enemy!

I agree with the others about this being a possible thyroid issue, that's what my wife told me.

Are you keeping to a good gluten-free lifestyle?

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can thyroid also cause sleep and appetite disturbances/swings? i've noticed since all these things started acting up (mostly when i had a dye injection, which i hear affects the thyroid) i've had the worst of both worlds, i can be extremely tired and extremely wide awake at the same time :lol: it's draining...since all that's acted up i've been so nauseous too

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anybody know? UGH it's just been driving me insane, this constant 24/7 appetite and nausea/empty feeling is going insane on me, eating does nothing for it, and since i'm so sick to begin with, eating bothers me so i feel stuck between a rock and a hard place...i've been sick for 11 months and only the past month, when i had that dye around, have i had that...before i had no appetite...right when i was about to go gluten-free, i have this, and to be honest i just can't until this is under control, it would have been easy having no appetite to make diet changes, but i know for a fact i have some other things wrong...yes, i know, it would be best to be gluten-free as soon as possible, i've been going easy on it, it's just this appetite is so insane that it'd just be way too hard...hopefully seeing a doctor very soon to see about the thyroid...i feel like when i react to something, it doesn't go away, it makes me wonder if that dye is still in my system from a problem detoxing or something...who knows, it just scares me that this appetite recently WON'T go away and makes me feel so queesy...it isn't like i have D or anything and it's going through me or anything

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I used to have a huge appetite before I went gluten free. It was like nothing could make me feel full. Believe it or not this disappeared on the gluten free diet. You might be just postponing the answer.

Have you had testing for celiac yet? Have you seen a doctor about possible thyroid issues?

If you want to have a diagnosis from a doctor you shouldn't go gluten free before all the testing is done. In that case I'd say hurry up and make an appointment, don't wait any longer!

Pauliina

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If I'm understanding you correctly, I did a one day juice fast to get rid of this. It was unbearable and I had to get rid of it. Eating did not help it, although it felt like it was hunger. I said, Hell with it, and decided to just quit eating. That's what animals do when they are sick too. Only humans think we constantly need to eat. But sometimes when your stomach is sick the best medicine is to let it rest.

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can thyroid also cause sleep and appetite disturbances/swings? i've noticed since all these things started acting up (mostly when i had a dye injection, which i hear affects the thyroid) i've had the worst of both worlds, i can be extremely tired and extremely wide awake at the same time :lol: it's draining...since all that's acted up i've been so nauseous too

Definitely! Hyperthyroid and you eat a lot, hypothyroid and you don't have much appetite but still gain weight on what little you eat. Hypothyroid makes you sleep a lot, hyperthyroid gives you insomnia.

You might also have peripheral neuropathy which can be caused by diabetes or a B12/Folate deficiency. Many people who are celiac get this because their body doesn't absorb b vitamins properly. I'd suggest taking a large dose of B vitamins every day. Be sure to get B12 and Folate, but B6 and B1 are important too. Sublingual is good just in case you aren't absorbing properly.

This web site has some good sublingual B's http://ourhealthcoop.com/ that I'm currently using. Also Trader Joe's sells a sub-lingual folic acid/B12.

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well got some thyroid things tested, but question, is it i hear with hashis you can hang swings, but is it possible to be hyper and hypo at the same times? i swear, it's so strange, i'm wide awake and tired at the same time, i get a lot of extremes at the same exact time

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anybody know? i really want to know this because i know it can all be complicated and i feel so sick that i don't want to make any mistakes :lol: one more bad reaction and i'll explode...i'm thinking of getting a thyroid scan, cause i'm wondering some acid reflux like attack i had was actually my thyroid, because it really interfered with my breathing, put me in panic, threw me body out of wack and it started in my throat area so it's all i can think of that makes sense...i have itchy/strange feelings and around my thyroid it feels inflamed, and i do have some swallowing issues so i wonder if i could have some inflammation/infection from it all

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The problem is that your not eating right. If you have thyroid and celiac and your not doing everything to treat them, it can cause many problems that don't make any sense.

Can you be tired and wide awake? sure. I've been there. I have hypothyroid and celiac. When I first cut gluten out, I had the infamous insomnia. It seems its a typical side effect. (at first) With insomnia I was wide awake but oh so tired. I couldn't sleep no matter what I tried and I take sleep meds!!! They didn't work. This lasted for a few weeks. I think once I got a hang of the food, things changed.

I just saw the doctor yesterday and she said that if you don't eat right and you have multiple conditions, you will get all kinds of side effects that just don't make sense.

Don't forget stress. It alone can make you very sick.

You need to treat all of your conditions. Not sure if you have celiac disease but if you have already been tested (!!!) then you need to go 100% gluten free. If you get dianosed with thyroid, then you need to take your meds everyday!

Its all about taking care of yourself. Being Gluten free is hard enough when we try, I could only imagine how hard it is for someone who needs to be but doesn't quite go the distance.

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oh i know, i'm just wondering because i've had such a bad time with doctors so i need to be my own doctor and find out these little loops and things i should have tested...one doctor said vitamin deficiencies don't exist :lol: i know i have celiac for whatever reason, but i've had other things happen so i'm trying to get it straight...time is precious and i wouldn't want to be gluten-free and find out things that needed to be treated like along with it months and months later, i want to be sure now

just the thing is i've been mostly home 24/7 from some of these things, it's not like i don't want to go out, i just feel so bad that if i go out, it's a horrible experience or i feel so bad i'm dying to come back home, my bodies amess and i have been eating better recently, but i feel when i'm at the point where the neuro problems aren't so bad and my body doesn't feel so off the wall, i'll be out all the time and it'll be better...being home all the time isn't much help but when you feel this off, not much you can do :rolleyes: ...i want to make sure a thing like a thyroid problem or deficiencies/infections are holding me back

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oh i know, i'm just wondering because i've had such a bad time with doctors so i need to be my own doctor and find out these little loops and things i should have tested...one doctor said vitamin deficiencies don't exist :lol: i know i have celiac for whatever reason, but i've had other things happen so i'm trying to get it straight...time is precious and i wouldn't want to be gluten-free and find out things that needed to be treated like along with it months and months later, i want to be sure now

just the thing is i've been mostly home 24/7 from some of these things, it's not like i don't want to go out, i just feel so bad that if i go out, it's a horrible experience or i feel so bad i'm dying to come back home, my bodies amess and i have been eating better recently, but i feel when i'm at the point where the neuro problems aren't so bad and my body doesn't feel so off the wall, i'll be out all the time and it'll be better...being home all the time isn't much help but when you feel this off, not much you can do :rolleyes: ...i want to make sure a thing like a thyroid problem or deficiencies/infections are holding me back

I feel ya.

This last summer was the worst ever. I saw a neuro, a gyno, an endo, a gastro..etc... oh don't forget the mental doc. I had ultra sounds (please note the plural there), cat scans, biopsies (again plural). I was falling apart. I had more problems at 31 then someone twice my age. Things were happening to my body that I never knew existed. I'll tell you what. One doctor hit the nail on the head and refused to send me to a specialist. It would've been a surgeon. She said because I was diagnosed with Celiac, I should take care of that first and see what happens after.

Everything from the summer was gone. Just disappeared. Eat right and everything else just goes into place. I am so glad I never saw that surgeon, I didn't need to.

If I listed all my problems, you wouldn't believe me. I didn't leave the house either. I struggled to go to bed and then struggled to get up. I went Gluten free and went through some other crazy, random things... After my body calmed down a little (over a month), I was a new person. I was walking on air. You couldn't bring me down if you tried.

Good luck with everything and get to the doctor. Its time to get better. Cause if you do have celiac disease. It doesn't end there and you'll need a few months to regain yourself before you'll be ready to battle this thing. It is a battle. I'm doing it right now. I am 5 months in. I had 3 good months (really really good) and 1 not so good and now... the worst month. You see, I'm just trying to be honest. It wont end with a diagnosis. You have to put both feet forward and go for it.

I have a blog that I keep as a diary of MY personal experience with celiac disease. For some, it will help with understanding that this IS like a roller coaster and its normal to feel different everyday. For others it may seem scary, that you don't want to be so confused. It's how it was for me. The only thing I can do is be honest. If you want to read it, let me know. I can't post it here.

Good luck and keep talking to us, so we can help.

Bobbi

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the worst month how? with dealing with it? not physical problems, right? i had it lucky, before i became real sick, people used to wish they were like me :lol: naturally, i have the spirit where nothing phases me, very layed back, very open...somebody could take something away from me perminately and i'd be like hey, that's why there's other things and i always think of that now, how easy it would have been back then for everything...thats my personal goal, to be what i was, because when you have that mindstate, life is perfect....but haha makes me think of my other thread, did you ever have any REALLY strange neuro problems? out of body/third person feelings, nothing sinks it, don't know how to react to anything and all those strange out of the mix things?

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Hi RPM999,

I am no expert on this, but I have read some threads on this forum about adrenal fatigue. I believe some of them mentioned hot/cold feelings also.

Anyway, I have a frog in my throat, although my surgeon insists it is really a bumpy thyroid nodule. Heck, I guess he went to medical school so maybe he knows what he is talking about. Probably isn't a frog really. Anyhow, joking aside, my chop doc (surgeon) has been doing thyroids for over 20 years. When I first went to my GP, he had me get a cat scan with the radioactive contrast. This was before the chop doc saw me. My chop doc (thyroid expert) said I should have just got an ultrasound instead, and that would have given him all the information he needed to diagnose the problem. Chop doc would have done the ultrasound himself in his office. So cheaper, faster, and less chance of harming the thyroid. So, if your GP suggests a thyroid Cat-scan with contrast, you might consider asking for a referral to a thyroid specialist first before doing the cat-scan. Just a thot. I have no idea if other thyroid docs feel the same way about ultrasound vs cat-scan..

Paul

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the worst month how? with dealing with it? not physical problems, right?

Physical. I have been sick since dec 22nd. Everything I eat hurts. 20 minutes after eating... bam! pain.

Hopefully its just my body healing from being glutened cause I need to get up and moving again. I haven't been this sick since the summer (pre-diagnose)

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Hi RPM999,

I am no expert on this, but I have read some threads on this forum about adrenal fatigue. I believe some of them mentioned hot/cold feelings also.

Anyway, I have a frog in my throat, although my surgeon insists it is really a bumpy thyroid nodule. Heck, I guess he went to medical school so maybe he knows what he is talking about. Probably isn't a frog really. Anyhow, joking aside, my chop doc (surgeon) has been doing thyroids for over 20 years. When I first went to my GP, he had me get a cat scan with the radioactive contrast. This was before the chop doc saw me. My chop doc (thyroid expert) said I should have just got an ultrasound instead, and that would have given him all the information he needed to diagnose the problem. Chop doc would have done the ultrasound himself in his office. So cheaper, faster, and less chance of harming the thyroid. So, if your GP suggests a thyroid Cat-scan with contrast, you might consider asking for a referral to a thyroid specialist first before doing the cat-scan. Just a thot. I have no idea if other thyroid docs feel the same way about ultrasound vs cat-scan..

Paul

i hear the dye can really effect you if you already have thyroid problems, so it makes me wonder if that could be why he said not to as well...i'll definately never get a scan with that dye after what it's done lol but it's still scary

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i hear the dye can really effect you if you already have thyroid problems, so it makes me wonder if that could be why he said not to as well...i'll definately never get a scan with that dye after what it's done lol but it's still scary

Yep, ultrasound is the way to go. It's actually 2nd time around for me on the radioactive iodine with cat-scan. First time was 5 or 6 years ago, when I broke my left elbow pretty good. I have slightly high blood pressure too, and had cut out all salt for several years in hopes that would reduce the BP. What I didn't realize was that none of the vitamin pills I was taking several times a week had iodine in them. So its possible I was low on iodine also. I tested this actually. When I first got the thyroid lump 1 year ago I got a bag of apples and ate a couple with iodized salt on them. After a short while I felt all charged up and ready to go. Since then I have made sure my vitamin pills contain iodine. My doctor didn't see an iodine deficiency on my tests, but I had started using iodized salt again and taking vitamin pills with iodine a few weeks before seeing him. So it probably read ok on the test because of that change in diet.

Well, to go back to comparing symptoms. I had memory problems, and concentration issues back then, and also was tired and sleepy, although I couldn't seem to actually get any sleep. My feet/ankles would swell badly, and I had sinus congestion and gum problems. My feet were often cold. Plus the usual digestion problems. Couldn't eat dairy or beans without lots of lactaid and beano and they didn't ever really seem to work for me. Since going gluten-free I have felt much better and it is certainly worth the effort for me. I started noticing improvements within 4 days in my sinuses. They opened right up and I can breath now! Digestion also improved dramatically. They way I understand it though, there is a silent version of celiac that does not show obvious digestion symptoms. It does however create other non-digestion issues. They call them "associated conditions". I get the impression that some of the non-GI symptoms react more slowly than the GI ones as far as improvement in symptoms go. So, if you are having silent celiac symptoms, (non-GI), then your symptom recovery after going gluten-free might not show up as quickly. Doesn't mean it won't help though if you have celiac. Slow improvement is certainly better than continual worsening. It does seem to me that if you have silent version (non-GI symptoms) that getting tested is even more important so you know what the cause is. That's just my thinking on it, hope it helps.

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how long has your remodel been going on, and how much destruction has been occurring? I'm wondering if they've been kicking up other nasty stuff - not just mold, but lead in old paint, asbestos in acoustic ceiling, etc...

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Wow, Rpm999, I hear you when you say that you feel bad staying home and going out. I just had to watch my husband take our kids to church without me. I just hate this. The last 4 months have been aweful and it seems like no one seems to really understand the pain I'm in.

Bobbi, I would love to read your blog. You sound like you've had as much done and maybe more than me. And, I'm so new to this whole thing (just diagnosed last Thursday, but it was only 60% specific since I had already been on a gluten free diet for about a month-had no idea I was celiac, a friend just recommended that I go on the diet since it can help with all kinds of disorders). Anyways, how can I find out where your blog is located? Thanks so much.

Good luck to everyone here and I hope that everyone starts to feel better very soon.

CarolynV

I feel ya.

This last summer was the worst ever. I saw a neuro, a gyno, an endo, a gastro..etc... oh don't forget the mental doc. I had ultra sounds (please note the plural there), cat scans, biopsies (again plural). I was falling apart. I had more problems at 31 then someone twice my age. Things were happening to my body that I never knew existed. I'll tell you what. One doctor hit the nail on the head and refused to send me to a specialist. It would've been a surgeon. She said because I was diagnosed with Celiac, I should take care of that first and see what happens after.

Everything from the summer was gone. Just disappeared. Eat right and everything else just goes into place. I am so glad I never saw that surgeon, I didn't need to.

If I listed all my problems, you wouldn't believe me. I didn't leave the house either. I struggled to go to bed and then struggled to get up. I went Gluten free and went through some other crazy, random things... After my body calmed down a little (over a month), I was a new person. I was walking on air. You couldn't bring me down if you tried.

Good luck with everything and get to the doctor. Its time to get better. Cause if you do have celiac disease. It doesn't end there and you'll need a few months to regain yourself before you'll be ready to battle this thing. It is a battle. I'm doing it right now. I am 5 months in. I had 3 good months (really really good) and 1 not so good and now... the worst month. You see, I'm just trying to be honest. It wont end with a diagnosis. You have to put both feet forward and go for it.

I have a blog that I keep as a diary of MY personal experience with celiac disease. For some, it will help with understanding that this IS like a roller coaster and its normal to feel different everyday. For others it may seem scary, that you don't want to be so confused. It's how it was for me. The only thing I can do is be honest. If you want to read it, let me know. I can't post it here.

Good luck and keep talking to us, so we can help.

Bobbi

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