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

Had Cd A While, Now Ra Too


Ann1231

Recommended Posts

Ann1231 Enthusiast

Hi,

I've been really careless. I was diagnosed 7 years ago with celiac disease, hypoglycemia and told to eat low carb and no processed foods, etc. I did great for about 3 years, lost weight, felt wonderful, then got lazy. I've gained all my weight back AND have developed rheumatoid arthritis!

I refuse to take the drugs for ra so I am back to the gluten free diet, except a bad backslide yesterday and today. I can tell already, with stomach pain, joint swelling and pain.

Do you all ever slip like this? I am really kicking myself now because I think I probably would not have developed the ra if I had stayed on my diet years ago.

Do any of you have similar secondary diseases? How do you cope?

thank you,

Ann


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

This is an example of the need to follow the diet....other things develop. It can be hard it was hard for me at first but what kept me in line was the threat of having to deal with life threatening illnesses if I don't follow it. If the word cancer and osteoporosis doesn't scare anybody I don't know what will. Also I knew how bad I felt when I did have gluten. I have hyperthyroid along with celiac.

There is only a certain amount of things you can do...at least you are at a point now where you are back on the gluten free diet. That may help with alot of your problems. I think you should consider getting on some liquid vitamins or a type of vitamin if you are not already. I suggest probiotics as well as enzymes. Do you have other symptoms as well or were you a celiac who did not experience symptoms?I assume you are well versed in what celiac can be hidden under and so forth? This is a great support place to come to. Everyone on here is great and if you have any questions just ask and I'm sure one of us would know. :D

Ann1231 Enthusiast

thank you for your reply.

I have the chronic constipation, extreme thirst, (checked for diabetes several times, finally told it was hypoglycemia), weight gain, fatigue, muscle pain, light sensitive, itchy eyes, chronic sinus congestion/swelling, stomach pain, gas, etc.

I have learned alot reading all 19 pages of posts here today! Some of it is very discouraging but some is encouraging. I am really angry with myself for going off the diet for so long and doing this damage to myself. I pray that going back on the diet relieves the RA. I have read many websites and medical sites that claim it can relieve it although, like celiac, there is no cure.

Ann

KaitiUSA Enthusiast

I'm sure the diet will help a little at least. RA can be linked to celiac disease if the diet is not followed so it does make sense. Yes those are symptoms of celiac...have you had them since you have been eating gluten again? When did you go gluten-free again?

You do know to check cosmetics(lipsticks especially)toothpastes and that sort of thing as well. Also if you want to be very careful not to get any traced ingested you should check lotions and shampoos, soaps and that sort of thing too. I have all my products gluten-free as well to be extra careful.

Here is a list of forbidden things...might help you since you are just getting on the diet again https://www.celiac.com/st_main.html?p_catid=12

I hope you get feeling better soon and don't get discouraged if it takes a little bit...it took me 3 months to feel a lot better then a few more months to get normal. So it takes time, discipline, and patience...and there are some great foods we can still have :D Email me if you need anything :D

cdford Contributor

As long as I keep the celiac disease under control, the RA, Hypoglycemia, FMS, etc. also stay under control. I let my diet get whacked--even a little--and the symptoms show back up for all the other stuff. If nothing else would do it, that would be enough encentive for me to remain fervently gluten-free.

ianm Apprentice

I was so sick for so long that I just got sick and tired of being sick and tired. You have to really want to be healthy. I haven't had any real desire to eat gluten foods because I just don't want to be that sick again. You will find that the diet we have to follow is just not as difficult as it may seem at first. There are lots of good things to eat that don't have gluten in them. Whenever temptation strikes we're not that far away. It can be done.

Ianm

Ann1231 Enthusiast

you all are great. I have felt so much better mentally today just reading this board!

I have learned my lesson. I didn't know that celiac and ra were related until a couple of days ago, thru my internet research and my food diary...I definitely found a correlation between my dietary indiscretion and my ra symptoms.

cdford, do you take the typically prescribed ra drugs? I really don't want to. I started homeopathic treatments a few days ago. Too soon to know anything...

and I had no idea to check my cosmetics! thank you for the link..I printed it out and will run thru my cabinets.

Ann


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



Celiac.com Sponsor (A8-M):



plantime Contributor

I have celiac disease and RA. In my case, the RA was found llooonnnnggg before the celiac disease was! For me, the glutenfree diet does not stop the RA pain and swelling. HOWEVER....if I do eat gluten, the swelling and pain are extremely worse!! Don't kick yourself over what is past, just do what you can to do better now and in the future!

kabowman Explorer

My PCP wants me to see a RA-MD but due to all the other changes I had been dealing with, I said, no. My RA Factor test came back neg. however, she said that could change with time. I was all on my left side but now my right side is "catching up" and I think I am going to have to add a new doc to my list of specalists. I keep denying it...it will go away, right? After all, I can type and walk today.

Anyway, my pain was better once I got my diet under control but it is back to bad again and I have not cheated at ALL. I never cheat and sometimes, my safe food makes me sick and I have to throw it away (like my brownies the other day, a WHOLE pan full).

Some of the symptoms for RA & celiac disease are the same and the ones that have not gone away, match RA. I had no idea these were linked...and I have never tested positive for celiac disease. I think I will let the doc recommend a doc for me and start the process - I see her again in two weeks.

I guess, I do have a question after all - I know once you have a auto-immune disease, you have a higher than average chance of having more than one, right? or wrong? and if yes, how many have duplicate?

-Kate

plantime Contributor

I have three: celiac disease, RA, and allergies.

With RA, it does not go away. Certain circumstances (in my case pregnancy) will throw it into remission, but I have never seen it go away permanently. Flare ups happen. You should see an RA doc at least for initial evaluation and advice. Just because you have no problems today does not mean you will have no problems next week!

cdford Contributor

Remember that it is still winter out there...and RA along with all other arthritic conditions seem to act up worse during winter. My symptoms are not bad enough yet to take a drug specifically for the RA. I do take pain medications, etc. for the myriad of difficulties (including RA and FMS) that I do have. We watch the RA carefully from visit to visit. It never goes away, that is true. It does, however, wax and wane. It is stable when I am gluten-free even if it is not healed. Stable does not mean that there is no pain or swelling, only that it is minimized.

Ann1231 Enthusiast

what do you mean you watch it carefully? what do you look for at your visits. do you go to a rheumatologist?

I have been reading a lot about the raw vegan diet and how it is an inflammatory diet. I am going to try that and see how I feel.

thank you all so much for info!!

Ann

cdford Contributor

Yes, I see a good rheumatologist. Not all of them are familiar with the fibromyalgia and other arthritic side symptoms associated with celiac disease, so try and find one who is. He checks the joints that tend to be swollen and tender every time I go. Unfortunately, he also presses every tender point. He knows I am in real trouble if I draw back before he can get to touch me! Diet and weather both seem to play a role with my FMS and my RA. Do a little research on your own, try to keep your diet simple and natural, and track your symptoms with both diet and weather. You will probably get a good feel for what helps and what hurts.

Best of luck!

sdore Enthusiast

My mon has RA and I feel foryou because it is a horrible disease. I wonder if you had the RA first and then the celiac disease.

The only reason I say this is because I have a autoimmune thyroid disease and RA is anotherr autoimmune disease. What I have read about these two diseases is that celiac disease can come after. But I don't know???????

You should go to a RA doctor! I am sure he/she can help especially with the pain.

nikki-uk Enthusiast

My husband was dx with psoriatic arthritis 4 yrs ago.Coeliac was dx 7 months ago.HIs arthritis is basically the same as ra but with the skin condition psoriasis.

This is also an autoimmune disease.My husbands gut troubles started with him taking NSAIDs (non steriodal anti inflammatories).These are routinely prescribed for arthritic conditions,as a pain killer and to take away inflammation.

I firmly believe these drugs kick started my hubbies celiac disease.Whilst taking them he was passing blood in stools,and his pain in stomach unbelievable.

These drugs no doubt have made life bearable for many arthritis sufferers,but I think coeliacs should give them a wide berth.

Also I would like to add that you often find that the 'first flare-up' the worst.This was certainately the case with my hubbie.

Now the arthritis can affect any joints but for him mainly his toes-and hands.

Strangely for a lot of people,the diagnosis of celiac disease seems to open the floodgates for other auto-immune diseases.(or the reverse)

Good luck!

Ann1231 Enthusiast

I am really starting to notice a food connection. When I eat dairy, citrus, and a slip of gluten ing., I feel awful! This is amazing to me how food affects all the joints!

Thank you all for your posts. I'm learning a lot and getting encouraged, despite the pain and swelling :)

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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

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

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,153
    • Most Online (within 30 mins)
      7,748

    Mmoc
    Newest Member
    Mmoc
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.