Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Fibromyalgia? Ra? Both?


num1habsfan

Recommended Posts

num1habsfan Rising Star

Hi, friends. I know a lot of you have Fibro or RA, so I figured I'd ask you guys...How do you know which you have and did you get tests and is there any medication for it??

I'm confused because I have the symptoms of fibro mainly the swelling and affected by change in weather, but anywhere I researched it said inflammation is RA, not fibro (and I DEFINITELY get inflamed joints!)

It's driving me nuts...during the thunderstorms yesterday morning I basically couldn't even move, I was aching everywhere. And I've been getting sharp pains in my left hand, so bad I couldn't even bend a finger, which made me useless seeing as how I'm a lefty.

Please give me your suggestions, I would like to get things fixed somehow before I start university in just over a month from now!

~ lisa ~


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nikki-uk Enthusiast

I know that for RA there is a specific blood test called the 'rheumatoid factor' that picks it up.

I'm not so familiar with Fibro - other than I know that there are specific points on the body (called 'trigger points') which are very painful when pressed.

My hubby was dx with Psoriatic Arthritis (similar in symptoms to RA).

This was diagnosed because he was negative for the rheumatoid factor - had the skin condition Psoriasis - had very elevated inflammation markers in his blood (ESR and CRP) and was having terrible joint pain.

There are many types of arthritis - and many tests they can do so I think a specialist is necessary.

Good Luck :)

~alex~ Explorer

I think a high Sed Rate and RA factor are pretty much diagnostic for RA or at least some kind of arthritis. I don't think either test are 100% specific or sensitive though. I know X-rays and examination of the synovial fluid can be done but I don't know if much damage shows up in the beginning stages of the disease.

That's all I really know about RA. I hope you can find some answers.

Yellow Rose Explorer

I have both.

RA is diogonsed with a blood test. It is genetic. My brother and I have had the genetic test. We have the same parents but only have one common chromosome between us and it has the genetic marker for RA. I have active RA he does not. RA mostly affects women about 85%. It can be set off by an injury, childbirth, or a tramatic experience in your life along with stress. It causes swelling, pain, fatigue, weakness among other things. Contact the Arthritis Foundation and they will send you info on RA as well as Fibromylgia. They also have a self help course that you can take so you don't wind up injuring your joints with everyday tasks. If you are not on any meds for RA you need to see a Dr. about this right away. Deformities in the joints from the swelling will occur over time and you need to control the swelling.

Fibromylgia is diogonsed by pressing on the trigger points to see how many are tender. There are 16 trigger points. Six or more is considered active. Fibromylgia affects the area where the muscles connect to the joints. It can cause fatigue, muscle pain, joint pain, but usually does not cause swelling. There is a great book on fibromylgia called Your Personal Guide to Living Well with Fibromyalgia. It is avaiable through the Arthritis Foundation.

I have found since going on the gluten free diet my pain from RA and fibro have decrease significantly. My sleep quality has also improved so that is helping the Fibro. I understand from reading the past posts that a significant number of people with joint pain have found that it disappears over time. Seems that 8 months to a year is the magic time period. I am ever hopeful since I am only in the 4th month of doing this.

Fiddle-Faddle Community Regular

You might pm Ursa Major, who I think was diagnosed with both, and to my memory, both disappeared when she stopped eating all the foods that triggered it (in her case, gluten was the biggie, but there were many others, including peppers, tomatoes, etc.)

You also might want to check out the OMG thread and the Lyme disease thread. There seems to be a surprisingly large percentage of celiacs who have also been diagnosed with Mercury toxicity AND Lyme disease. While I don't seem to have those particular problems myself, I've seen enough research to be convinced that it is a huge undiagnosed problem for many. And the doctors are, if possible, even more idiotic about those potential problems than they are about gluten.

happygirl Collaborator

For RA, they'll probably run your sed rate (ESR), CRP, and ANA, which are all autoimmune and/or inflammation related.

For fibro, there is no blood test. It is a set of symptoms that occur together.

tarnalberry Community Regular

RA is ruled out with blood tests that are fairly straightforward.

Fibro is a dx of exclusion (one of the things to exclude being RA, but also lyme, hypothyroid, and others). My understanding is that the use of trigger points is an important guideline (certainly for "textbook diagnosis") but it's as much art as science.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Teacher1958 Apprentice
Hi, friends. I know a lot of you have Fibro or RA, so I figured I'd ask you guys...How do you know which you have and did you get tests and is there any medication for it??

I'm confused because I have the symptoms of fibro mainly the swelling and affected by change in weather, but anywhere I researched it said inflammation is RA, not fibro (and I DEFINITELY get inflamed joints!)

It's driving me nuts...during the thunderstorms yesterday morning I basically couldn't even move, I was aching everywhere. And I've been getting sharp pains in my left hand, so bad I couldn't even bend a finger, which made me useless seeing as how I'm a lefty.

Please give me your suggestions, I would like to get things fixed somehow before I start university in just over a month from now!

~ lisa ~

Fibromyalgia does not cause inflammation. That's why anti-inflammatories don't relieve the symptoms. I had all of the symptoms of fibromyalgia, and when I went gluten free, they disappeared. Prior to that, I had been prescribed Cymbalta (anti-depressant), which is a serotonin reuptake inhibitor combined with norepinephrine, and is used very successfully with people who have fibromyalgia. It helped my pain symptoms a lot, but didn't totally get rid of them, and the fatigue and other symptoms remained. The two times I've been glutened, the fibromyalgia symptoms came right back. There may be other causes of fibromyalgia, but in my case, gluten plays a huge part.

num1habsfan Rising Star

Ok so the RA makes sense then, if you say its heriditary. Almost all females on mom's side of family has it. And am I remembering correctly that Celiac greatly increases the chance of getting it?? What do you guys take for pain relief??

If this helps explaining more, I get the arthritis flareups where I've been injured...most times it will feel like I broke or fractured or whatever the place all over again

I do have hypothyroidism, but is it possible that my untested/undiagnosed Crohn's could also be the cause of fibro or RA, because are they not also related issues???

Sorry if I'm asking too many questions! You'd think after 4 1/2 years I should have this all figured out, but I don't..

~ Lisa ~

~alex~ Explorer
I do have hypothyroidism, but is it possible that my untested/undiagnosed Crohn's could also be the cause of fibro or RA, because are they not also related issues???

I could be wrong but I think the type of arthritis associated with crohn's disease is usually something different than RA. I'm not sure what blood tests are used to diagnose it. So if you have crohn's you might want to look into that. Is your GI doing a small bowel series to test for crohn's? I think early treatment for crohn's is important so I hope you can get this figured out.

Generic Apprentice

My dad has RA, my mom, my sister and myself have FM. The RA tests are not always 100% accurate. A fairly straight forward FM website is www.fibrohope.org. Either way you have to be examined to be diagnosed with either.

Good luck with the ongoing battle of trying to get yourself healthy.

num1habsfan Rising Star
I could be wrong but I think the type of arthritis associated with crohn's disease is usually something different than RA. I'm not sure what blood tests are used to diagnose it. So if you have crohn's you might want to look into that. Is your GI doing a small bowel series to test for crohn's? I think early treatment for crohn's is important so I hope you can get this figured out.

It's a long story, alex....let's I had 3 biopsies done that were supposed to be for Crohn's but instead they tested only Celiac cuz they thought I was making that up, too. So I have no way of officially proving I have it (even tho I have the key symptoms including bleeding, and the diet helps).

and Generic..thank you. It sure has been a battle. I guess I'll have to talk to my doctor about it next time I go for an appointment...knowing them they'll refuse to test :rolleyes:

~ Lisa ~

Ann1231 Enthusiast

I have both. I was diagnosed about 10 years ago with Fm and 2.5 years ago with RA. I am on several meds for it and have to have blood tests every 6 to 8 weeks. The RA meds, methotrexate, plaquenil, prednisone, do not help the fibro at all unfortunately.

Ann

num1habsfan Rising Star
Its very probable that celiac disease, like most other so-called "autoimmune" diseases is caused by cell-wall deficient bacteria. The apparent genetic cause is more likely a result of cwd bacteria hijacking the cell machinery to alter gene expression. Cwd bacteria grow slowly and this is why it may take many years for celiac disease to become apparent. Inherited gene differences would produce the condition at birth. It is apparent that many of the symptoms of celiac disease are similar to those encountered in other diseases such as Lyme, fibromyalgia, CFS, GWS etc and in these diseases there is good evidence of borrelial, mycoplasmal and other cwd bacterial involvement. Antibiotics, especially bacteriocidal antibiotics that target the bacterial cell wall are ineffective and bacteriostatic antibiotics that prevent the bacteria from replicating must be used. The cwd bacteria disable the immune system, invading the very macrophages that should be killing them and so shield themselves from antibody attack. You can read about all this at Marshallprotocol.com where celiacs are having excellent results eliminating celiac disease for good, just as are people suffering from a host of other autoimmune diseases. I am a scientist by training and have extensively researched Marshall's thesis and there is no doubt that the science is good. The results of treatment with long term pulsed bacteriostatic antibiotics are equally impressive - see "success stories". With appropriate antibiotic treatment you can CURE celiac disease. Take the trouble to have a good look at the site. The marshallprotocol starts with minocycline. TYhe FDA in the US has accepted Marshall's thesis and evidence for the efficacy of this antibiotic in treatment of sarcoidosis - another disease caused by cwd bacteria.

Wow thats way to scientific for me to understand! Can you say that in plainer english please? ...and it doesnt really help me because I'm definitely not from the US..

~ Lisa ~

nikki-uk Enthusiast
Its very probable that celiac disease, like most other so-called "autoimmune" diseases is caused by cell-wall deficient bacteria. The apparent genetic cause is more likely a result of cwd bacteria hijacking the cell machinery to alter gene expression. Cwd bacteria grow slowly and this is why it may take many years for celiac disease to become apparent. Inherited gene differences would produce the condition at birth. It is apparent that many of the symptoms of celiac disease are similar to those encountered in other diseases such as Lyme, fibromyalgia, CFS, GWS etc and in these diseases there is good evidence of borrelial, mycoplasmal and other cwd bacterial involvement. Antibiotics, especially bacteriocidal antibiotics that target the bacterial cell wall are ineffective and bacteriostatic antibiotics that prevent the bacteria from replicating must be used. The cwd bacteria disable the immune system, invading the very macrophages that should be killing them and so shield themselves from antibody attack. You can read about all this at Marshallprotocol.com where celiacs are having excellent results eliminating celiac disease for good, just as are people suffering from a host of other autoimmune diseases. I am a scientist by training and have extensively researched Marshall's thesis and there is no doubt that the science is good. The results of treatment with long term pulsed bacteriostatic antibiotics are equally impressive - see "success stories". With appropriate antibiotic treatment you can CURE celiac disease. Take the trouble to have a good look at the site. The marshallprotocol starts with minocycline. TYhe FDA in the US has accepted Marshall's thesis and evidence for the efficacy of this antibiotic in treatment of sarcoidosis - another disease caused by cwd bacteria.

A cure for all these auto-immune diseases? :huh:

You done the treatment? - had the repeated biopsies ?

num1habsfan Rising Star
A cure for all these auto-immune diseases? :huh:

You done the treatment? - had the repeated biopsies ?

So you're confused as heck too nikki I see? :P .

You do realize this dudes post really has nothing to do with what I'm asking on advice for?

~ Lisa ~

georgie Enthusiast

May I suggest putting Fibromyalgia Thyroid into Google.Lots of info out there. Answers at your fingertips. And for those on Thyroid medications that still have Fibro - perhaps a change of medication ? Synthroid is only one of the many choices available. :) And thank goodness for that !!

  • 2 months later...
kimberlyloves the Lord Newbie

<ahttps://www.celiac.com/uploads/emoticons/default_huh.png' alt=':huh:'>

Hi, friends. I know a lot of you have Fibro or RA, so I figured I'd ask you guys...How do you know which you have and did you get tests and is there any medication for it??

I'm confused because I have the symptoms of fibro mainly the swelling and affected by change in weather, but anywhere I researched it said inflammation is RA, not fibro (and I DEFINITELY get inflamed joints!)

It's driving me nuts...during the thunderstorms yesterday morning I basically couldn't even move, I was aching everywhere. And I've been getting sharp pains in my left hand, so bad I couldn't even bend a finger, which made me useless seeing as how I'm a lefty.

Please give me your suggestions, I would like to get things fixed somehow before I start university in just over a month from now!

~ lisa ~

Hey Lisa,

If you are like me I don't think it is Fibro stuff. I beleive the pain is caused from damaged nerves and tissue as a result of gluten damaging your system. I have been in sever pain for 8 years with no definete diagnosis only chronic pain syndrome.The weather definetly gives us worse pain. I have tried anti seizure meds,methadone 2mm,fentenl patches, meditation ,demerol,dilladid,toradol,etc.I find long acting hydomorphine works the best. You get a bit sleepy but your body adjusts and you can function with the pain.

Find a doctor who beleives in you and that your pain is real.

Good luck

kim

Hope that helps a bit,

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.