Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Are you sure it's Fibromylgia?

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:19 AM in Fibromyalgia
I was diagnosed with Fibro. Had every one of the symptoms. And I see that the list has grown to include some that were not part of this syndrome when I suffered.

My diagnosis was a mistake. The disease I really have is called Non Tropical Celiac Sprue aka Celiac Sprue aka Sprue.

The symptoms of Non Tropical Celiac Sprue are (can include some, many, or just a few of these):
look at the list of symptoms provided on this site.
All the classic Fibro symptoms
But they progressivly worsen over time, some seriously fast, some more slowly.

The problem in Celiac disease is that a protien called 'gluten' can not be digested and destroys the lining of the small intestine called villi. When enough villi are destroyed the body stops being able to digest protiens, vitamins, minerals, and fats in the food that you eat. The body has no fuel to make repairs which causes the pain.

The diagnosis is through a simple blood test or small bowel biopspy (which you can get sedatives for).
The treatment is a gluten free diet. That's a little hard but well worth it to be pain free.

But please don't wait. It took me more than 10 years to find a doctor who would really look at me and notice that I had problems beyond the classic Fibro. By that time permanent damage had been done to my nervous system. Despite almost 10 years of gluten free living I still have severe pain from nerve damage.

If you are seriously sick of being sick and tired, have your doctor test you for this disease. I already know at least 8 people who I've told this story to who thought they had fibro but were misdiagnosed. They are feeling better now. All but one are completely recoverd and have no more pain so early diagnosis can make all the difference.

The blood test is only about 80% accurate though so be sure to have the biopsy. OR you can just try a gluten free diet for two months and see if you feel better (make sure you eliminate ALL gluten for this option).

I believe that there is such a thing as fibro. I just hate to see others suffer like I did and end up permanetly crippled with pain for the rest of their lives when there is a way to avoid it.

Let me know if you have any questions or need help. After nearly a decade, I am an expert.


  • This is very interesting. thanks for the info cherspirit, I'll have to check on that so your symptoms were the same as fibro? I have suffered stomache problems all my life and infertility and so much more. It is expensive to eat all gluten free isn't it? I have checked into it for my son because of behavioral issues. What kinds of things do you eat? I would like to try it. So should I just ask my doc for this blood test?
  • girlinpain,
    You are describing me to a tee before I was diagnosed!!!!!!!
    Does your belly stick out no matter how much you eat or excersise or diet (like the starving children in Africa)?

    That is a classic sign of starvation which is what kills.
    Continuting to eat gluten will only make you worse and worse. I could not even walk when I was diagnosed. Once it gets that bad the nerves really don't heal completely for everyone, some (I know some who have completly healed, but it is real rare if you let it go on more than a couple months. I was using two canes at the time I was diagnosed and had been for more than 3 years. I still have damage.

    People with Celiac disease who go untreated eventually die from it because it destroys the bodies ability to absorb food, heal, rebuild tissue, reapair, clot, etc. They die from starvation. It is VERY PAINFUL!!!!! I was as close to dying as you can get when they finally diagnosed me. It is a choice of wanting to live or not.

    The expense depends on what you eat. I am able to eat from the local gorcery store and order from the internet in bulk for "treats". If you have a freezer, you can get some really good breads from a company in Canada that is totally gluten free and only hires Celiac's to ensure that there is no contamination.

    The costs of the food beyond what "regular" food costs can be deducted from your taxes because it is a prescription diet but you may need a doctor's diagnosis.

    If you can afford it ask your doctor for the blood test. But it is not totally accurate!! There is a 20% incorrect positive rate so the biopsy is best. That is expensive!

    I don't really understand this new site totally yet. Can you send me a PM (I think that still stands for private message). Or just continue on this post. I will check it everyday. (yesterday it crashed so I could not get on, sorry)

    I'll reread this tomorrow morn and probably remeber some things.

    Hang in fhd
  • CherSpirit,
    I printed out your post today, and brought it to my doctor. She read it, and I had the blood test. I hope you're okay that I did that. Thanks so much for the tip. I'll have the results in a few days.
  • could you tell me a few foods that would aggravate this disease and then what are sum of the symptoms. im very interested in this. thanx for any help
  • i would be interested in a two month no .gluten diet. i do have to be careful because i have a very slow moving digestive system.please help me im thinking this could be a big part of alot of my symptoms,
  • i would be interested in a two month no .gluten diet. i do have to be careful because i have a very slow moving digestive system.please help me im thinking this could be a big part of alot of my symptoms,
  • interesting. i mean im not totally in the dark about this as i have read about it so many times.

    one of my good friends switched to a gluten free diet she has sorijions (spelling so sorry). she went on that diet and bam so much better!!!!!!!!
    she still has the fibro.
    but this is something for all to think about.
    this is why the "good" "rheumies" out there will do every test under the sun. to make sure they do not mess up on your diagnosis of fibro.
    everyone can still have fibro plus other issues.
    as in my IBS that was DX with a colonoscopy.
    stinky gas yes. so when i read that part im like hmmmmmm
    tan stool hmmmmmmm
    unexplained weight loss hmmmmmmmmm has happened in the past.

    so everyone please all the advice given here is awesome. but we all very from person to person.
    don't just think "mabye" i have this or "mabye" i have that you will drive yourself insane.
    you the only proper way is to find out is by going to your dr. and if that dr does not come through you go to the next.

    so many illnesses and diseases mimmick each other so much. it get confusing...

    hang in there all . i hope everyone is having a pain free weekend!!!!!
    :X :* >:D< O:)
  • Hiya Patsy >:D<
    The gluten free diet :sick: . The things you have to stay clear of are: Bread, Pitta Bread, Biscuits,Gravy, Cereals,Sausage,cakes :''( , anything thats been in contact with flour mainly. Patsy there are so many things. When you buy a loaf of bread, and you touch it for freshness, and it springs back up, well with the gluten foods it dont do that :D . FREE FROM RANGE, any health food stores will help with information :) . I have only given you an example of some of the foods. Like the sausage some butchers will seel it some dont, because the sausage machine has to be so clean, and not contaminated with the flour :? . I hope this will give you a guide. There is the COELIAC SOCIETY you can join :) , just send a donation, what you can afford basically :O . Here is a link that may help www.coeliac.co.uk. i hope this will help. Keep me posted! :H

    Angie x >:D<
  • Hiya again >:D<
    Firstly you need to have a blood test for coeliac disease :) . Go and see your doctor :S . If its negative and you still show symtoms, then you have to be reffered to a specialist :) so they can do the camera test. They have to look at the colon :O . There is another camera they can do, its a capsule with a camera on the end of it, its about the size of the tip of your little finger, you have to swollow it :( . Then they attatch pads to you, this films your digestive system :O , that way they can see exactly whats going on. Keep me Posted! Oh my daughter had all the tests and was on the gluten free diet for a while, so i have had some experience :? . She was eventually diagnosed with IBS and functional Gut Disorder. :)

    Angie x :H
  • I am still early in the stages of any diagnosis. My daughter was tested for Celiac's disease, but was negative (even biopsy). I do have problems like IBS, but I haven't seen a doctor yet, although I've been referred. I've been so busy seeing neorologists, rhemy's, orthopedic surgeons and spine surgeons, that I thought the problems with my stomach could wait. But, no matter how much weight I lose, my stomach still has a "pouch." I am 5'3", and at 105 lbs, somebody asked me if I was pregnant. Then, I got really sick (diahreea for days), and lost four pounds, and I still had a pouch. I laughed it off saying no matter how much I weigh, I will still have it. I have had three back surgeries, 2 C-sections, shoulder & hip pain, neck arthritis, PCOS (fertility treatments and low carb diet with metformin to concieve), nerve pain, numbness in my hands and feet, etc. Seems like classic fibro, but I am going to ask my doctor to do the blood test. Thanks for the thoughts. What can it hurt?
Sign In or Register to comment.