Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748

    Nick H.
    Newest Member
    Nick H.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...