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Please Help!

gluten free still ill night sweats aches and pains depression

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#1 designerstubble

 
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Posted 21 November 2012 - 05:37 AM

hello everyone
i'm new to all of this celiac thing having only been diagnosed at aged 39 (unofficially) 5 weeks ago.

a history of at least 5 years of gi problems, increasing in severity the last 2 years. have low ferritin (4), low haemaglobin (9.2) borderline deficient b12.

i have been gluten-free for almost 5 weeks and initially began to feel better quickly and i was SO happy ...

the thing is 3 weeks into being gluten-free i had a terrible attack of aches and pains, feeling cold and terrible night sweats for a week. it seemed to resolve itself and i have slowly been building myself back up again...

then again 4 nights ago i started feeling cold and sweating profusely through the night, i have also had loose bowels, no aches or pains though, but could sleep half the day.

i am at my wits end, i'm so depressed, everything i google with night sweats keeps coming back to lymphoma... and obviously anything you google with celiac mortality rates comes back to small bowel cancer and lymphoma etc....

i'm already depressed and anxious, but now i just dont know what to do... i'm so worried i have something sinister mostly because of these night sweats (they are terrible) i cant sleep after i wake at around 3am drenched. i have been very careful to be gluten-free and don't believe i have cross contaminated.

i'm trying so hard to keep things in perspective, as i have a little 5 year old boy to look after.

i am so frightened, and very stressed... can't get an appointment with my doctor until 8days from now (as usual)... and i am so sick of docs and hospitals... colonoscopy came back neg, i am waiting for an endoscopy and an MRI of my intestines, been waiting 6 weeks and its torture.

pleeeeeeease anyone, night sweats?????
appreciate ANY help, thank you
  • 0

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


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#2 kareng

 
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Posted 21 November 2012 - 05:42 AM

Are you a female? The obvious cause of night sweats for a female your age would be hormone changes as you age. Talk to your OB/GYN about that.

Have they checked your thyroid? That can cause night sweats.

Not fun but not as bad as all the things you are imagining. :)
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#3 designerstubble

 
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Posted 21 November 2012 - 06:01 AM

Are you a female? The obvious cause of night sweats for a female your age would be hormone changes as you age. Talk to your OB/GYN about that.

Have they checked your thyroid? That can cause night sweats.

Not fun but not as bad as all the things you are imagining. :)




yes, am female... thank you for responding so quickly (i'm so desperate i have been sitting here waiting to see!)
They checked my thyroid, all ok...

Aren't I a bit young for the menopause?? I did consider it but kind of shrugged it off because i know my mum and older sister didn't even begin with symptoms until they were late 48-50.

Thank you for your help though...

Do you think a hormone imbalance could cause night sweats?
(I did wonder if my body has gone a bit crazy since i came off gluten as I got sore boobs too for a couple of weeks?)

Apologies for rambling on, I have no one to talk to about it all :(
  • 0

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#4 kareng

 
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Posted 21 November 2012 - 06:19 AM

Look up peri menopause from reputable sources. You are not too young. Hormones levels start to fall in your 30's.

http://www.webmd.com...e-perimenopause

http://www.mayoclini...ECTION=symptoms


You should check with a doctor but I think its a little early to jump to cancers.
  • 1

LTES

 
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#5 designerstubble

 
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Posted 21 November 2012 - 10:00 AM

Look up peri menopause from reputable sources. You are not too young. Hormones levels start to fall in your 30's.

http://www.webmd.com...e-perimenopause

http://www.mayoclini...ECTION=symptoms


You should check with a doctor but I think its a little early to jump to cancers.


thank you for your help, i will ask for some hormone checks... just read that celiac and menopause are linked anyway...
as for the cancer, i guess it's because i have been on google too much reading about celiacs and lymphoma/cancer... and cancer being diagnosed within 2-3 years of celiacs being diagnosed ie higher mobidity within first few years....

it's difficult when you are depressed and feeling low with no one to talk too, so thanks for your responses
  • 0

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#6 GFinDC

 
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Posted 21 November 2012 - 10:06 AM

I saw something about the immune system being more active at night when we are sleeping recently. That could be the cause, as celiac is an auto-immune disease and the immune system does the damage and causes imflammation. Celiac damage may cause earlier menopause also. Infertility is a possible symptom.

I used to have night sweats also but they went away. It took a while on the gluten-free diet and also eliminating some additional food intolerances before they stopped.

Night Sweats
http://www.celiac.co...__ night sweat
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 designerstubble

 
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Posted 21 November 2012 - 11:33 AM

I saw something about the immune system being more active at night when we are sleeping recently. That could be the cause, as celiac is an auto-immune disease and the immune system does the damage and causes imflammation. Celiac damage may cause earlier menopause also. Infertility is a possible symptom.

I used to have night sweats also but they went away. It took a while on the gluten-free diet and also eliminating some additional food intolerances before they stopped.

Night Sweats
http://www.celiac.co...__ night sweat


that is an interesting link thank you so much... I guess i feel a bit better knowing that although i'm all alone, i'm not actually all alone... (if that makes sense!)

I thought it was strange as my night sweats only started 2-3 weeks after being gluten free... (i actually thought it was detox from gluten as i had aches and pains too), but guess it can't be really...

thanks a lot for all your help, i'm on a solitary road at the moment with dark clouds above my head... i hope i see some sunshine soon...

is it actually possible to feel great ever again?
  • 0

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#8 Takala

 
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Posted 21 November 2012 - 11:54 AM

Did they check your thyroid antibodies, as well as the levels of the thyroid hormones ? If they don't look for it, they can miss auto immune thyroid disease (Hashimoto's). This basically cycles your thyroid into periods of overdrive, so you "test out" with supposedly normal thyroid levels, but there is still a problem.

Hormones- as women age, the levels/balance of estrogen to progesterone keeps getting out of whack, so you might have good luck using a high quality, natural progesterone cream. Gluten free diet might have let your hormones kick it up a notch, but not in a balanced way.

Also, do you live in an area where Lyme disease is prevalent, and have you had any tick bites ? (the "aches and pains" part, combined with fevers.... just throwing that out for consideration)

Be careful with caffeine, set a cut- off point so you don't consume it after a certain time in the afternoon/evening.
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#9 GFinDC

 
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Posted 21 November 2012 - 03:12 PM

that is an interesting link thank you so much... I guess i feel a bit better knowing that although i'm all alone, i'm not actually all alone... (if that makes sense!)

I thought it was strange as my night sweats only started 2-3 weeks after being gluten free... (i actually thought it was detox from gluten as i had aches and pains too), but guess it can't be really...

thanks a lot for all your help, i'm on a solitary road at the moment with dark clouds above my head... i hope i see some sunshine soon...

is it actually possible to feel great ever again?


Yep, or pretty close to great anyway. It may take awhile, and you may have to go through the process of eliminating even more foods than wheat, rye and barley if additional food intolerances pop up. Which they tend to do for some of us. That is one of the longer threads on night sweats, but there are more than that. The topic comes up every so often. So, no, you are definitely not alone! :D It's hard to feel good when your body is attacking itself, and you aren't absorbing the nutrients needed to repair it, let alone function every day.

Your small intestine is around 22 feet long, so that is a lot of tissue to heal and replace. The easier you make it on your digestive system, the quicker you will heal. Eating things that irritate an already inflammed gut is like pouring gasoline on a fire. So, it is better to keep with simple whole foods for a while, until things settle down.

Here are some ideas for starting the gluten-free diet. And some threads below with lots of info that may help.

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


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  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#10 ravenwoodglass

 
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Posted 22 November 2012 - 05:12 AM

You have gotten some good advice about the night sweats. Many of us do go through menapause a bit early although if you are in the beginning stages things could reverse after you are gluten free. You mention you are waiting on your endo. If the endo is to confirm your celiac diagnosis you shouldn't be gluten free until that is done or it may well come back a false negative. Hang in there and read as much as you can here to prepare for the changes that need to be done to keep you safe once you are on the diet. Don't worry too much about the risk of cancers. Your risk goes down to the same as the non-celiac population after you have been gluten free for 5 years. Some of us went many, many years undiagnosed (for me it was almost 45) and are still cancer free.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#11 designerstubble

 
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Posted 22 November 2012 - 03:23 PM

Thank you all so much, you've been a great help... It's all so much to take in! I would never have believed how difficult it all is even though being veggie 25 years and dealing with allergies with my son has given me good practice. It's just hard when you're body is not well. And as I sit here typing, these odd moving pains always in the same place in my abdomen? And sporadically around my body. I think that being depressed doesn't help much either, I can't seem to pull myself out of it, I keep imagining the worst... It's awful as I am now affecting my gorgeous little boy, he's only 5. Can't seem to lift the negativity. The doom.
But I do so much thank you all, I have a lot of reading to do!
As for waiting for endo, my docs have been useless... I have been waiting 6 weeks, I couldn't have continued on gluten for this time. I could not have looked after my boy, I was so very ill. And I'm only just a bit better now. They actually said they were doing the endo to check for bleeding and cancer as my platelet levels are high. Guess this hanging around isn't helping much either.
Peace and thanks to you all x
  • 0

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#12 GFinDC

 
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Posted 23 November 2012 - 08:38 AM

Thank you all so much, you've been a great help... It's all so much to take in! I would never have believed how difficult it all is even though being veggie 25 years and dealing with allergies with my son has given me good practice. It's just hard when you're body is not well. And as I sit here typing, these odd moving pains always in the same place in my abdomen? And sporadically around my body. I think that being depressed doesn't help much either, I can't seem to pull myself out of it, I keep imagining the worst... It's awful as I am now affecting my gorgeous little boy, he's only 5. Can't seem to lift the negativity. The doom.
But I do so much thank you all, I have a lot of reading to do!
As for waiting for endo, my docs have been useless... I have been waiting 6 weeks, I couldn't have continued on gluten for this time. I could not have looked after my boy, I was so very ill. And I'm only just a bit better now. They actually said they were doing the endo to check for bleeding and cancer as my platelet levels are high. Guess this hanging around isn't helping much either.
Peace and thanks to you all x


HI DS,

The gluten-free diet may seem difficult at first as you go through an adjustment period. But after you have done it for wa while it gets much easier. Keeping with simple home cooked meals is helpful at first, you don't eed to worry about things as much since you know what you put in the foods. It's much easier than tryying to sort out a ton of ingredients in processed foods.

Depression may be cause by vitamin and mineral deficiencies IMHO. It may lift after you have been gluten-free and heal some. Then your body can properly absorb the nutrients it needs. Remember you need fats in your diet to absorb some vitains. They are the fat soluble ones, like A, E,D, K. You can also try sub-lingual B-12, some people say it helps them.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#13 winter

 
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Posted 04 December 2012 - 08:09 PM

hello everyone
i'm new to all of this celiac thing having only been diagnosed at aged 39 (unofficially) 5 weeks ago.

a history of at least 5 years of gi problems, increasing in severity the last 2 years. have low ferritin (4), low haemaglobin (9.2) borderline deficient b12.

i have been gluten-free for almost 5 weeks and initially began to feel better quickly and i was SO happy ...

the thing is 3 weeks into being gluten-free i had a terrible attack of aches and pains, feeling cold and terrible night sweats for a week. it seemed to resolve itself and i have slowly been building myself back up again...

then again 4 nights ago i started feeling cold and sweating profusely through the night, i have also had loose bowels, no aches or pains though, but could sleep half the day.

i am at my wits end, i'm so depressed, everything i google with night sweats keeps coming back to lymphoma... and obviously anything you google with celiac mortality rates comes back to small bowel cancer and lymphoma etc....

i'm already depressed and anxious, but now i just dont know what to do... i'm so worried i have something sinister mostly because of these night sweats (they are terrible) i cant sleep after i wake at around 3am drenched. i have been very careful to be gluten-free and don't believe i have cross contaminated.

i'm trying so hard to keep things in perspective, as i have a little 5 year old boy to look after.

i am so frightened, and very stressed... can't get an appointment with my doctor until 8days from now (as usual)... and i am so sick of docs and hospitals... colonoscopy came back neg, i am waiting for an endoscopy and an MRI of my intestines, been waiting 6 weeks and its torture.

pleeeeeeease anyone, night sweats?????
appreciate ANY help, thank you


I have had the same fears when I started getting night sweats at around 38. (I'm42 now.) Mine were so bad for a time I just knew I was doomed! I think it was hormone related, as I noticed it definitely got worse one week a month. I started taking a really good vitamin, along with extra selenium and magnesium and they are almost gone. I still have them once a month, but no where near as bad as before. I am not sure which supplement made it better - the selenium or the magnesium - but I really believe it is related to one of them, as I can tell a difference when I am not so vigilant with the supplements. You might give that a try, just be sure to read what the maximum daily selenium is- I think 400? - and make sure that your vitamin doesn't have alot in it. I have read that selenium has a low toxicity level, so be sure to check the amounts. And you are def not too young for the beginning stages of menopause. I know it's hard not to worry, but the majority of my friends from age 28-48 have night sweats, and none of them have cancer. Hope you feel better soon. I have a 4 year old and worry about cancer all the time too. I feel ya!
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