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

Anyone With Rheumatoid Arthritis?


kimis

Recommended Posts

Emmysweet Newbie

Liz---have you tried eliminating sugar from your diet to get rid of the P? My P is on my knees on down now--was all over, but I have only been on my diet for less than 4 mths. Hoping that it continues to clear. I also do the teas from pagano's book.

  • 2 weeks later...

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



Celiac.com Sponsor (A8-M):



mushroom Proficient
For all who have posted here who have been diagnosed--with anything, be it celiac, RA, Psoriatic arthritis--to me you are almost the lucky ones. Please believe me that I say that with deepest empathy for you and the utmost respect and sincerity. I am not so enlightened yet as to what is causing my pain and GI issues, and am crying while typing this because it can be soooo hard to deal with. It would be such a relief, bring some peace of mind, to KNOW why.

I can say to the positive, however, that my little girl has had no more joint pain symptoms since going gluten free :)

I feel your pain!

Rachel, I was just rereading this thread and noticed this post that I had not really seen and/or absorbed before. Are you making any progress in solving your issues? I had no idea that you were in so much pain. My heart goes out to you. At least your daughter is getting some relief :)

mushroom Proficient
My son was diagnosed with psoriatic arthritis about a month ago....similar to rheumatoid, just called psoriatic if you have psoriasis.

I was bummed b/c I had kept him gluten free for the past couple of years in hopes of improving his psoriasis, and hoping to prevent more auto immune diseases from popping up. I've had to realize that diet doesn't cure everything,

I somehow missed the remainder of this thread after I posted initially. I am sorry that your son went on to develop the arthritis part of psoriatic arthritis even while on a gluten free diet. It does seem like PsA is resistant to improvement on the diet, and I am not sure why. Certainly, I started the diet with high hopes that both would miraculously disappear, but it was not to be. Although I do feel loads better gluten free (and so does my husband). I think that stress can cause an arthritic flare; at least that is what I'm blaming my last one on. Does your son take any medication for his PsA?

mimommy Contributor
Rachel, I was just rereading this thread and noticed this post that I had not really seen and/or absorbed before. Are you making any progress in solving your issues? I had no idea that you were in so much pain. My heart goes out to you. At least your daughter is getting some relief :)

Thanks for asking, Neroli :)

Actually, I am having farrrr less pain than I was just a few months ago. I can't truly attribute this to going gluten free, however, although it does seem to have increased my energy level DRAMATICALLY being off of gluten (and soy, most of the time, too). But, as I said, my little girl RARELY has joint pain anymore (which is an incredible blessing!).

I was in such pain from Sept, 08 through Jan., 09 that I was actually having difficulty walking, however, I have had "pain" since I was a young girl (like my little girl now does). Sad, but true. Had blood tests and HLA's done for RA and PA, both negative. MRI showed arthroscelrosis and compression of discs, but doc. didn't get too excited about it.

I know this--my mother (who is now diagnosed with both psoriatic and osteo arthritis) did not test positve for any arthritis for nearly 3 decades, while suffering horribly and having body parts becoming deformed. My father is positive for RA, and his hands are getting more deformed every time I see him.

I do not take any meds for the pain, but have certainly been offered the full cocktail. Some days are diamonds, some are coal. Some activities guarantee days or weeks of pain to follow, including my work. What can we do? Such is life.

I no longer exercise, both because the pain became so much and because of other life circumstances that require my time and attention. I miss it terribly, and look forward to swimming season here--but even swimming is difficult for me. If the water temp isn't like a warm bath it makes me ache terribly.

I also get numbing bursts of localised pain that truly frighten me and often take my breath away.

It DOES bring tears to me to read/hear of others suffering joint pain. It's horrible and painful and robs you of your life. It saddens me, and heartens me.

Wishing you ALL the best and much comfort to come!

Jestgar Rising Star
I no longer exercise, both because the pain became so much and because of other life circumstances that require my time and attention. I miss it terribly, and look forward to swimming season here--but even swimming is difficult for me. If the water temp isn't like a warm bath it makes me ache terribly.

I also get numbing bursts of localised pain that truly frighten me and often take my breath away.

Rachel, I find that if I don't exercise (something, walking, stretching) everyday, then over time my pain increases. If I have several days in a row at work where I'm only on the computer then my knees and hip ache so badly it can be hard to sleep. On the days where I'm doing a lot of sitting/standing/walking to get things (5 feet or so) then I feel pretty good the next day.

  • 2 years later...
RobinsEggBlue Newbie

Try going to www.glutenfreedrugs.com

It is run by a pharmacist and he even lists within a specific drug which manufacturer is gluten-free and which isn't!

It's a good place to start. I have written to him about this issue but he is away at a conference so haven't had a response yet.

Most pharmacists are too busy to look beyond the insert that comes with the drugs. :huh:

ALL the biologics have the "possible" component of gluten but there is no way of knowing which lot could be gluten-free!!

I'm going to check with the company that sends me my Enbrel to see if they could ask for the lot that was made with gluten-free ingredients. I'll probably have to ask the doctor to write it into the prescription.

RobinsEggBlue Newbie

It took about 8-9 months to be pain free without Advil.

I do understand how busy it gets with little kids! Mine are now 17, 15, 14 and 11 and the first 3 were 3 under 3-1/2, so I know it can be hard. The soy free thing really might help you though.

FYI, 90% of the soy produced in this country is GMO (genetically modified and considered "round-up ready"). This is totally not a good thing to be ingesting, especially in children. For more information go to Mercola.com

Best of luck to you.

Mellan


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



Celiac.com Sponsor (A8-M):



RobinsEggBlue Newbie

Lonewolf---your story is so similar to mine. I just went and got mri results today and they said I had a tear in one of my discs in my neck---but I really, really think it is arthritis--mainly b/c the doc said that most people my age--39--would have a similar picture and "although its hard to tell, I think this disc here is the culprit." My hands hurt occassionally. since going gluten free, sugar free and a largely whole foods diet, my psoriasis has really improved (from all over to just my knees and below) and my arthritis in my hands has gotten much better. The arthritis in my feet is gone. BUT my neck-it still hurts. I started my diet on Jan. 1st. So it has only been less than 4 mths.

I have debated whether or not to go soy free. How did you come to this conclusion? My homeopath thinks soy is very very good for you. I have very little dairy---I eat eggs and the occasional plain, organic yogurt.

I also had the tingling sensation in my hands and that is mostly gone.

this forum is incredible and has really helped. To the person that was teary today---that was me in December. Hang in there--its a journey for sure but things do get better. E

Hi emmysweet, giving up soy for me was very easy, one because I was now allergic to it and two, I learned that 90% of the soy produced in this country is GMO. That did it for me. No way was I ingesting that stuff. My doc has me on totally organic, non-gmo food. No plastics and no microwaving. She asks me to not be near car exhaust or smokers, things I did already.....

Learning how to eat was very stressful until I figured it out. I substitute the flour I get at Whole Foods....Jules gluten-free Flour mix. It really works great and I don't notice any difference in taste. As long as I stay with UNprocessed foods, wheat and soy, I'm good.

Now I am trying to tackle the gluten-free drugs thing. Not easy when the ingredients list doesn't specify wheat....

Hang in there.....

Mellan

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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

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

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    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
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
×
×
  • 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.