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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Rheumatoid Arthritis Other Symptoms And Celiacs


Dancer

Recommended Posts

Dancer Rookie

Hi,

I have not been diagnosed with celiacs but have been diagnosed as RA. it has showed up in my blood and I've had a lot of pain and inflammation. I've noticed that when I go gluten free as well as eliminating things like potato and white carbs I get close to being symptom free. For years before the RA came on I've had lots of symptoms that no-one ever found a reason for, hay fever, anxiety, inability to concentrate, a little bit impulsive at times I seemed to have CF symptoms. My doctor just seems to think i have hypochondria since he cannot work it out. I am suspecting that i have been celiacs for a long time. My Mum was crippled with RA so I will do anything to get better. I've radically changed my diet. I'm finding it tough at times. Sometimes I feel hungry because its hard to find food. I'm having to change my whole lifestyle and preprepare.

I am wondering if other people have had similar issues. I'd love to hear your stories or any tips they may have. I'm alone with this. My doctors think I'm nuts for taking the approach I have, they seem to think I should take Celebrex and methotrexate. (Heavy drugs that make me sick)

I think I need to fix leaky gut and alkaline etc.

I'm also very constipated. I am paying for colonic irrigation at the moment to try to get things moving again and move out the toxins.

I'd love to hear from people who've been through similar.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Deaminated Marcus Apprentice

Hi Dancer, 

 

My main reason for my interest in Celiac or gluten sensitivity is to get pain relief.

I first had foot pain long ago that went to the other foot.

At first the doctor I had back then thought I was making it up as the pain would go from one foot to the other.

He finally did an blood test and i had a positive RA factor.

He sent me to a Rheumatologist who said it was fibromyalgia.

 

Later I went gluten free and I got some relief but then pain returned.

From a food diary and later a food intolerance blood test I found out I have other food intolerances such as red kidney beans etc.

 

This year I decided to do a gluten challenge in order to be tested for Celiacs.

Well  now my right thumb is swollen and burns.

My left thumb is ok but my left hand is sore.

Do you think that is Rheumatoid arthritis?

Do you know if the exact same joints have to hurt?

And do they have to hurt at the same time?

 

I've seen posts here and on a another board of people who got pain relief by going gluten free

and who discovered other food intolerances such as Casein in milk, or egg protein, nuts, legumes

are the major culprits.

 

I feel the same way you do about drugs. I'm looking for the source of the problem. 

Link to comment
Share on other sites
nvsmom Community Regular

Celiac disease can cause arthralgias too. I am one who gets pain that my rheumy thinks is celiac caused but my GP thinks is rheumatic. There are a few around here who have found that the gluten-free diet has helped in various types of arthritis but it seems to takes many months to years for the gluten-free diet to positively affect things. If you need a fast fix of symptoms, you might want to consider the meds that the doctors can offer until the gluten-free diet makes a difference for you.

I'm not very knowledgable in this area, I am sure someone else will be along to help.

Welcome to the board. :)

Link to comment
Share on other sites
Dancer Rookie

Hi Dancer, 

 

My main reason for my interest in Celiac or gluten sensitivity is to get pain relief.

I first had foot pain long ago that went to the other foot.

At first the doctor I had back then thought I was making it up as the pain would go from one foot to the other.

He finally did an blood test and i had a positive RA factor.

He sent me to a Rheumatologist who said it was fibromyalgia.

 

Later I went gluten free and I got some relief but then pain returned.

From a food diary and later a food intolerance blood test I found out I have other food intolerances such as red kidney beans etc.

 

This year I decided to do a gluten challenge in order to be tested for Celiacs.

Well  now my right thumb is swollen and burns.

My left thumb is ok but my left hand is sore.

Do you think that is Rheumatoid arthritis?

Do you know if the exact same joints have to hurt?

And do they have to hurt at the same time?

 

I've seen posts here and on a another board of people who got pain relief by going gluten free

and who discovered other food intolerances such as Casein in milk, or egg protein, nuts, legumes

are the major culprits.

 

I feel the same way you do about drugs. I'm looking for the source of the problem.

Marcus I've been reading a book called conquering arthritis by Barbara Allen and I'm finding it helpful. She says she got better from diet etc.

The distinguishing thing with RA is its usually asymmetrical meaning flares occur on both sides of the body at the same time so I'm not sure if yours sounds like RA. I think you are on the right track by looking into allergies/sensitivites and getting your gut in order.

Link to comment
Share on other sites
ravenwoodglass Mentor

My RA has been in remission since a few months into the gluten free diet. For complete relief I found I also had to drop soy but that may not be the case for you. I was also prescribed the same drugs you were (and loads more!} and found them not to help at all. I hope you get some relief from the diet but it can take time.

If you need a diagnosis of celiac to keep you strict on the diet do keep on the gluten until after you are done testing.

Link to comment
Share on other sites
Dancer Rookie

My RA has been in remission since a few months into the gluten free diet. For complete relief I found I also had to drop soy but that may not be the case for you. I was also prescribed the same drugs you were (and loads more!} and found them not to help at all. I hope you get some relief from the diet but it can take time.

If you need a diagnosis of celiac to keep you strict on the diet do keep on the gluten until after you are done testing.

Thank you Ravenwood. Sounds like you've had a tough time, but your story is inspirational and gives me a lot of hope.

Link to comment
Share on other sites
janpell Apprentice

I don't have RA but do have PsA, which is pretty similar. I got off my DMARDs two years ago. A huge difference has been made through my diet. My GP's don't buy it but my Rheumatologist tells me to keep up what I am doing and come in for yearly check ups to make sure everything is good. Unfortunately, for me, it doesn't stop with just gluten. I have to watch and watch everything all the time. I definitely get symptoms (very strong ones) when I consume gluten but they don't necessarily always lead to joint pain but enough problems I keep away. Oranges and fresh tomatoes are immediate problem makers for my joints. I don't have a Celiac diagnosis because like you, I had so many problems and they never worked out, even with medications that my doctor just said it was stress and anxiety (which I didn't have but was getting because there were so many physical things going on with my body). I never would have guessed diet so I am lucky I started to react to my medications because I would have put all my trust in doctors and not looked into natural alternatives :) -  it's  been a life saver.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Dancer Rookie

I don't have RA but do have PsA, which is pretty similar. I got off my DMARDs two years ago. A huge difference has been made through my diet. My GP's don't buy it but my Rheumatologist tells me to keep up what I am doing and come in for yearly check ups to make sure everything is good. Unfortunately, for me, it doesn't stop with just gluten. I have to watch and watch everything all the time. I definitely get symptoms (very strong ones) when I consume gluten but they don't necessarily always lead to joint pain but enough problems I keep away. Oranges and fresh tomatoes are immediate problem makers for my joints. I don't have a Celiac diagnosis because like you, I had so many problems and they never worked out, even with medications that my doctor just said it was stress and anxiety (which I didn't have but was getting because there were so many physical things going on with my body). I never would have guessed diet so I am lucky I started to react to my medications because I would have put all my trust in doctors and not looked into natural alternatives :) -  it's  been a life saver.

I guess I've ad the benefit f my Mums experience. She was really sick with RA and the doctors couldn't help. I've known from the outset not to rely on them.

Link to comment
Share on other sites
Deaminated Marcus Apprentice

Hello all above (this post) an update...

 

When I saw a gastroenterologist about 2 weeks ago and he asked me what I was hoping to find,

I said me and my PCP want him to look for intestinal inflammation (Celiac or Colitis etc) as the source of my pain.

Well the jerk answered it's not as if you have Ankylosing Spondylitis, which ironically is what my PCP and I think I have.

 

Well my PCP just called me to tell me that the blood test results came in and I did test positive for HLA-B27,

the test for  Ankylosing Spondylitis.

 

So irony 1:  the gastro doctor jerk said I don't have   Ankylosing Spondylitis and now we have a positive blood test

for me to take to a rheumatologist. 

 

Irony 2:   My PCP tested me 2 times when I was gluten free, and the tests were negative.

Link to comment
Share on other sites
janpell Apprentice

Gluten really sets my neck pain off, no where else but definitely in my upper spine. It's very frustrating, isn't it.

Link to comment
Share on other sites
Deaminated Marcus Apprentice

janpell,    yes the darn neck pain.

 

It was so bad, and my PCP sent me for an MRI.

I don't know how to repeat the findings here as it's technical and too detailed to put here

but the neurologists (2) said there's nothing wrong with my neck.

Well then how come I can't bend it much to one side LOL.

 

But I'm still on the gluten challenge and the neck pain isn't bothering me much these days.

Pain moves around sometimes daily and sometimes weekly.

It's so strange.

Link to comment
Share on other sites
janpell Apprentice

Cut it out completely. It took me over a year to cut it out thinking it was this or that. I tested two months ago and although it didn't start the joint pain so much I got very strong symptoms for other things - psoriasis, mucus in stool, hair loss, neck pain and pressure in the base of my skull for 10 days after consuming. The longer I stay away from the more pronounced the symptoms were, whew, because I was having a hard time figuring it out because "I'm not Celiac" (because dr's won't test me) I really didn't believe it was the gluten but yeah, it was obvious. I do believe cross contamination gets me when I'm not careful. I am much happier, physically, when I eat a whole foods, gluten and dairy free diet (except goat cheese and parmesan on occasion). Just learning what I can get away with is where I am at right now.

Link to comment
Share on other sites
Dancer Rookie

I don't have RA but do have PsA, which is pretty similar. I got off my DMARDs two years ago. A huge difference has been made through my diet. My GP's don't buy it but my Rheumatologist tells me to keep up what I am doing and come in for yearly check ups to make sure everything is good. Unfortunately, for me, it doesn't stop with just gluten. I have to watch and watch everything all the time. I definitely get symptoms (very strong ones) when I consume gluten but they don't necessarily always lead to joint pain but enough problems I keep away. Oranges and fresh tomatoes are immediate problem makers for my joints. I don't have a Celiac diagnosis because like you, I had so many problems and they never worked out, even with medications that my doctor just said it was stress and anxiety (which I didn't have but was getting because there were so many physical things going on with my body). I never would have guessed diet so I am lucky I started to react to my medications because I would have put all my trust in doctors and not looked into natural alternatives :) -  it's  been a life saver.

I'm so glad you reacted to the drugs.  It sounds like you are much healthier because of it.  I hope it all comes together for me.

Link to comment
Share on other sites
Dancer Rookie

Hello all above (this post) an update...

 

When I saw a gastroenterologist about 2 weeks ago and he asked me what I was hoping to find,

I said me and my PCP want him to look for intestinal inflammation (Celiac or Colitis etc) as the source of my pain.

Well the jerk answered it's not as if you have Ankylosing Spondylitis, which ironically is what my PCP and I think I have.

 

Well my PCP just called me to tell me that the blood test results came in and I did test positive for HLA-B27,

the test for  Ankylosing Spondylitis.

 

So irony 1:  the gastro doctor jerk said I don't have   Ankylosing Spondylitis and now we have a positive blood test

for me to take to a rheumatologist. 

 

Irony 2:   My PCP tested me 2 times when I was gluten free, and the tests were negative.

That is so interesting that your PCP test was negative when Gluten free but seemed to be positive shen you weren't.  I am wondering if you heal one auto-immune disease you may be healing them all.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,504
    • Most Online (within 30 mins)
      7,748

    Celeste Small
    Newest Member
    Celeste Small
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
×
×
  • Create New...