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Fibromyalgia Or Celiac?


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71 replies to this topic

#1 HAPPY DOG SUZ

 
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Posted 02 September 2004 - 07:55 AM

Aloha!
I have recently been diognosed w/celiac.
Was previously diognosed w/fibromyalgia I have alot of pain and very tired. I was wondering if anyone thought they had fms but it was really celiac and they recovered? Suzanne
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#2 Alexolua

 
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Posted 02 September 2004 - 12:22 PM

I was told I had fibromyalgia. Though, most of the pain I was in from it seemed to go away.. overtime. That was before I went gluten-free though.. still working on trying to improve on the gluten free diet.

So, yeah.. I have been diagnosed with it, but it more or less went away (as in I don't want to walk pain, still get some like right now lol).. before I found out about Celiac disease.

If I'm not mistaken though fibromyalgia is basically like IBS. Doctors aren't sure why it's happening, so they give it that name so they can say something. So.. could be possible things would improve for ya. =)
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#3 Guest_barbara3675_*

 
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Posted 02 September 2004 - 05:10 PM

HELLOOOOOOOOOOOO--I have fibromyalgia, diagnosed 12/03. Take major amounts of magnesium w/ malic acid to contol the pain along with Mobic and anti-inflammitory and it has settled mostly from my shoulders to my fingers. My DIL who is the mother of my granddaughter who has celiac disease suggested that with my history of migraines/depression and now fibro, and also the tummy tenderness, I just might have a gluten intolerance. I got a blood test, negative, but the doctor just rolled his eyes when I suggested there might be a connection between the fibro and a gluten intolerance. The blood test can be a false/negative. I have read on the internet (and copied off for him) there ther can be a connection. I also think I could have a lactose intolerance--gluten intolerant people often do. I sent for the complete test kit from entero lab and am going to find out once and for all if I am intolerant to gluten and lactose. I am eating lactose and gluten free and am feeling better. I read on this board, however, that it can take quite some time to completely heal. I just couldn't believe it when I saw a thread devoped to fibromyalgia!!!!!! Keep talking to me. Barbara
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#4 ponita

 
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Posted 04 September 2004 - 02:21 PM

I truly think there is a real connection between fibromyalgia and gluten. In fact, my internist is KC treats chronic fatigue, ms and fibromyalia and he is fasinated with the gluten connection. Many of his patients have seen improvement in syptoms by being gluten-free. When I saw him last week he said some pts. see improvements in days to weeks (and occasionally some see no difference.) Since being gluten-free (10 weeks now) my joint pain has gone from rating it a #8 on a 1 - 10 scale to about a #2 or 3.
This relief of joint pain keeps my motivation going.
So I've gone from a DX of chronic fatique to fibromyalgia to now celiac sprue, so it's interesting to look at the big picture and say what is what...
All I know is although this is an new challenge I feel better than I have in a very long time.

Melissa
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#5 Ruth

 
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Posted 04 September 2004 - 04:49 PM

I was also diagnosed with Fibromyalgia....in 1999 after my second child was born.
After three years of pain, I was diagnosed with Celiac... b/c of my anemia... and after about 6-9 months gluten-free my fibromyalgia symptoms went away completeley. The doctors say this is a coincidence.... I definetly know it is related to gluten.

I was diagnosed with celiac disease in March 2003...
I have only had the pain of fibromyalgia when I have had a gluten accident!

Life is good.... the pain does go away!!
Ruth

PS Barabara...all my blood tests were negative for celiac disease... my biopsy was positive. Some people do not have postive anitibodies for gluten, but most definetly have celiac disease. Because of my negative blood tests, the diagnosis took a long time. Thank God for a gastroenterologist who saw so many celiac symptoms and insisted on the biopsy!!
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Ruth
Diagnosed 3/03 (Positive Biopsy/Negative Blood Tests)
Daughter dx 12/03 (Positive biopsy/Positive blood tests);
Two sons (Negative blood tests); One on gluten-free diet (6/04) ... cured his persistent, severe headaches.

#6 Guest_barbara3675_*

 
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Posted 04 September 2004 - 06:54 PM

Oh, Gee, Melissa and Ruth, you have made my day. I just know that you are right when you say that fibro and gluten intolerance are connected. I am so better now that I am on the gluten-free program and I am still working as hard as I was before. My tummy is starting to feel better too. I really have read a couple of articles where doctors have said their fibro patients have said their pain is so much less and they have said they are very skeptical, but if the patient says so...then "oh well".......that makes me so mad. Doctors can be so maddening sometimes. My doctor ran "a bloodtest" ,but my suspicion is that he ran one for celiac disease which I do not have. I suspect I have an intolerance to gluten which is another thing. I am in this alone, it seems, but I feel I am on the right track. I do so want to thank you for taking the time to respond. To have two things wrong with me that are so remote and then to have them related........where else would I have found people to make that connection with. My email is sundown@nnex.net if you would like to keep in touch, I sure would like to keep a dialog going with you. Barbara
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#7 muffinxx

 
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Posted 05 September 2004 - 06:20 AM

hi everyone i posted this in another topic but i am gonna paste it on here also

Hi everyone

had to reregister i was itching to type to you all..lol i was practically levitating when i found this forum and your replies to my post

ok here goes without scaring the hell outta u all

4 months ago my life changed i lost my mum she was 58

8 years ago she suffered very bad arm and shoulder pains and EVENTUALLY the doctor diagnosed her with fibromaralgie (bad spelling) which by the way only diagnosed this after she diagnosed herself after research

for a few years she was on painkillers then took plurecy and had rapid weighloss went from 11 stone to 6 stone, she was like this for a year and then her doctor diagnosed her with celiac, she stuck to her gluten free diet faithfully and for the next 2 years she didnt put on weight but the doctors dint send her for any more tests.

6 months ago she started taking very bad jaw pains( at first she just thought it was toothache) and also chest pains,then when she was in agony her doctor said it was a condition called trigeminal neuralgia, they never even sent her for an MRI scan, just wrote her a prescription for anti convulsants (typical of UK GP's) so when eventually the whole side of her face was numb and her speech was lost they sent her for a MRI

2 days later we had an appointment for the results, firstly they said they thought it was breast cancer, or maybey lung cancer and pointed it with a glare and frown she was a 5 a day smoker (what a blow for my mum) or possible a condition called neuro sarcasiodosis and they would put her on steriods and she had to have all sorts of MRI and bone scans that week.

throughout that week dont forget my mum although had a new lease of life after the steriods still could not speak to me, can you imagine how heartbreaking that was for both of us!

so after the test she was admitted to hospital for a brain biopsy as they thought it might have been a brain tumour at that point, they did not do it that weekend and let her out for the weekend, she took a viral infection at home and went back to the state she was in before the steriods ( which was horrific) you cant imagine out of respect for my mum i will not say what she was like! needless to say she nearly dierd at home that weekend!

she then was in hospital for 2 months they did not get anything from the brain biopsy they put tubes down her throat to see if they could get a specimin from her lungs they even asked us if she had been to america in the past few months???? they even thought it might be TUbercilosis!

they eventually came up with a condition called central nevous system vascilitis which is inflamation of the blood vessels and she basically was having mini strokes

i still have nighmares about the state my mum was in at the hospital as it was not diagnosed as a cancer she could not get in a hospice and have private time with her family and friends and more privacy , she was in a public ward for all to see!

she died in hospital i wasnt there i didnt make it on time i was 15 mins late!

they asked to do a post mortem i agreed and 3 months later we all attended thinking they were going to tell us it was a sinister tumour

IT WAS THE CELIAC!!!

the evidence was in her spleen they said it was the size of a walnut!!
they said that you can only detect the enlarging of the spleen not the shrinkage of it and with her spleen so small that she could not fight infection and she somehow caught the virus you find in chickenpox or it could have been stress a lot of things could have done it, jeez the common cold could have....plurecy nearly killed her 2 years earlier!

how tragic, my mum died of this condition, i do not want to scare the hell outta you all i just thought i would post this to let you all know about 2nd third and forth opinions from your doctor.

i miss her and think about her every day, if my mum had had a more switched on doctor she could have had her spleen removed and been on low dose antibiotics for the rest of her life,,tragic!

hugs
muffin
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#8 muffinxx

 
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Posted 05 September 2004 - 06:47 AM

now i am seriously levitating..lol


my mum was a fit woman, and the only condition she suffered from when i was little was very bad migranes 20 years ago!!!
and the next thing she developed derviticulitis which is IBS then she had a duadinal ulcer, then osteoperosis then fibromarlgia then trigeminal neuralgia!

i asked her specialist at the post mortem is this a heridetary condition three times he said no!!!!

a year ago i had bad stomach cramps i couldnt even have dressing on salads but i was visiting the toliet 5 mins later!!

he now wants me to go for a blood test that he says will show certain atibodies in my blood that will be evident if i haver an ulcer!

i did
x
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#9 tarnalberry

 
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Posted 05 September 2004 - 07:25 AM

I'm sorry to hear about your mom. That's awful.

You might want to check with your doc to find out what blood tests he's running, just to "be sure" ;-)

(BTW, Diverticulosis and IBS - while often causes simlar symptoms - are different, so if you're concerned about the former, make sure they don't settle for the latter diagnosis! A brief description of diverticulosis)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#10 muffinxx

 
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Posted 05 September 2004 - 08:00 AM

thanks will do :D
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#11 Guest_barbara3675_*

 
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Posted 05 September 2004 - 11:11 AM

MUFFINXX---You have my profound sympathy at the untimely death of your dear mum. I am 59 years old and am listening to what you say. If the only thing I have to do is avoid gluten to stay healthy, then I CAN DO THAT. Thank you so much for your addition to this particular thread. Know that the time you spent adding you comments here were well spent, because my mother has had lots of gasto problems, yet has lived to the age of 86. If I am to live to be old, I would like to not have all the problems she has had, and hopefully by eating the gluten-free (and probably lactose-free) life, I may be able to do that. Thanks again for your kind sharing of your story. Barbara.
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#12 muffinxx

 
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Posted 05 September 2004 - 04:15 PM

thanks!!

im so gutted!
x
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#13 ponita

 
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Posted 06 September 2004 - 10:20 AM

Muffinex - thank you for your story. We each have to stay on top of our own health conditions and not assume the doctors have all the answers.

My mother died in March of this year. She was 74 and dx with kidney failure 3 years ago. The sad thing is that she had been under the care of a cardiologist for 10 years and he did little to control her Blood pressure. After a decade of high B/P she damaged her kidneys and they don't discover it until she has only 12% useage.
My mother took her dialysis 3 times a week and never complained, never said "why me", she took it on as her lot in life and followed her diet to the letter.

My last conversation with her we were discussing my upcoming ultrasound and other lab work and she was giving me her words of encouragement. She said "What ever they tell you to do, you just do it, any special diet, you do it". She died the next day of a sudden heart attack and those words give me strenght above all and I know I can "do it".

Barbara, I'm with you. At this point in my life, I just have to be gluten-free and I can do that too! I do watch my lactose and only certain products cause me problems.

I'd like to hear from more people who have seen improvement from fibromyalgia symptoms after being gluten-free.

Melissa
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#14 muffinxx

 
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Posted 06 September 2004 - 11:04 AM

my thoughts are with you!

i always say to myself, i could have done more, and by the way, the nurses in the hospital were totally fed up with me anyway...there is not a question i didnt ask or a medicine i didnt look up on the internet

its funny, i am reading your replies and i thought the first thing you all would have said was take your doctor to court...lol i know americans been there plenty of times and u cant spit on the sidewalk withouth geting a letter from your lawer!

i have a boyfriend that is a vegetarian and wouldnt contemplate eating food that was put in a microwave...i am starting to think he has a point!

im am so glad i found this forum

when my mum had the rare fibromaraglia (in this country...god the doctors here are so condecending)..i backed her all the way!!!

i am type O negative just like my mum

i will stick to my gluten-free diet without the diagnosis

x
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#15 Guest_barbara3675_*

 
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Posted 06 September 2004 - 12:23 PM

Just checking in today to see how you are all doing. Did you notice that 117 people are interested in this topic. I am amazed. There REALLY is somthing to the fibromyalgia/gluten intolerance connection and no one will ever convince me otherwise. When they say that a person knows their own body better than anyone else...even their doctor, I really believe that. I ate icecream without even thinking about the lactose thing last night and have pains in my tummy today....it was gluten free. Going on a ten day vacation with lots of eating out, so that should be a real challenge. Hope I can find you all when I get back. Barbara
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