Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Very Weird, Rheumatoid Or Celiac?
0

9 posts in this topic

Hi! This is my first post, sorry if it is too long.

I have been dealing with swollen joints and fatigue for about seven years (I'm 21). My primary care physician from 14 to 19 ignored me and so I thought I was crazy. I went to college and got a new primary care physician who listened to me and tested for rheumatoid factor last summer, which came back negative. I continued to have fatigue and joint pain so I did some research on the Internet and found that food allergies could be to blame. So I tried exclusionary diets (dairy, wheat). The wheatless diet made things much better and so I made an appointment with an allergist. He tested for most common food allergies and everything came back negative. He told me that rheumatoid factor is not the be all end all test for rheumatoid arthritis and he sent me to a rheumatologist (hang on I'm getting to the point!)

So, I went to see the rheumatologist. He said well, could be arthritis, but I think celiac disease is a possibility. Any GI symptoms? Nope. He ordered blood tests for celiac and rheumatoid arthritis. They will call next week with results

My question is, if I have swollen joints and fatigue as my only symptoms, how could I have celiac disease?

0

Share this post


Link to post
Share on other sites


First let me point out that only 75% of the people with Rheumatoid arthritis have the antibodies for it. The other 25% don't get definitive treatment until the are around 50, by which time the damage is pretty severe. It could very well be celiac, and your symptoms are manifesting in your joints before they show in your intestines. You could also have intestinal symptoms, just not severe yet. Have you been tested for anemia? It is common with celiac, and will cause unbelievable fatigue. I hope this helps, and let us know how your tests turn out!

0

Share this post


Link to post
Share on other sites

You should also ask your Rheumy if they think there is a possiblilty of it being LUPUS. Just a thought, please let us know how the test turn out

Take care

0

Share this post


Link to post
Share on other sites

Thanks for responding. I guess I should ask about lupus, my great aunt died of it. That's a very scary thought though, and I am Queen Denial. Anyway, thanks again, I'll have the results in a week. (And if it's negative I guess I'm just crazy!)

0

Share this post


Link to post
Share on other sites

Lupus is a good thought. It is definitely worth looking into.

0

Share this post


Link to post
Share on other sites

Stacie - Do you have your results yet about Lupus? Just wondering. I have been thinking about you.

0

Share this post


Link to post
Share on other sites

Missy,

Thank you for your thoughts, :) I have not been back to the Rheumy yet but will go back sometime next month. Not sure what other tests she may run or if she will try to dx me with something or keep gathering info and waiting. I have had two positive ANA's and elavated SED rate (which detects inflammation).

I am still having a lot of GI probs and seeing yet another GI doc next week, this will be my 3rd opinion. ;) I talked to my Rheumy to see if she thought it could be Lupus related and she thinks it could be "inflammation" due to Lupus (I think is what she said). So we shall see..... Thanks again!

0

Share this post


Link to post
Share on other sites

Speaking of Lupus (since my great grandmother died of it), I recently had the ANA blood test and I think it was negative. That's good :) If you have it in your family, it's always good to test it and rule it in/out. Stacie, I know we've talked about this I just had no info yet. It's been a while from my last post since I've had to wait for all the results. After a gazillion blood tests, and a colonoscopy, I know just a tad more than I did before and I still know nothing. The doctor wrote me a letter summarizing all the results and everything looked good and normal... except that he re-ran the celiac profile and 2 of the 5 tests were positive. I think one was the igg and I have no idea what the other was. Apparently the three I tested negative for were the three most specific for celiac. I have no intestinal damage and I'm not on a gluten-free diet. Soooo... I'm in the rule-out celiac stage, but I'm not ruling out intolerance. The other thing that showed up abnormal was a slight elevation in bilirubin. I've had that before but a previous doctor said it was a false-positive. Since it's showing up again, the new doctor is going to check if it's the indirect or direct bilirubin. My liver profile tests are otherwise normal. Talk about a lot of tests with no answers yet.

Doc wants me back in about 5 weeks to talk more. He wants to test for more antibodies and mentioned a small bowel x-ray. I'm really going to ask for some food intolerance testing... esp casein. Also for bile obstruction, etc. I did read somewhere that a slight elevation in bilirubin can occur with casein intoerance. I feel like Dori in Finding Nemo: Just keep swimming.. swimming, swimming. Good thing is, I'm getting closer to an answer and some really unpleasant conditions have been ruled out :)

Gretchen

0

Share this post


Link to post
Share on other sites

My 10 yr. old went thru this; his ANA was positive and despite having very badly inflamed hands/feet/ankles his SED rate was only about 25. His rheumy was actually the one who first thought of a wheat allergy or celiac dx. instead of poly JRA. A positive ANA is not necessarily definitive, and most RA patients have to rule out lots of other things (including Lupus, another hard-to-dx problem!) . Don't forget lyme disease or parvovirus, either.

Anyhow, once he was reliably gluten-free for several months, his JRA "symptoms" disappeared and have not returned. No matter how scared you might be of lupus, remember that RA is no walk in the park either. Good luck! Keep digging!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      102,680
    • Total Posts
      914,400
  • Topics

  • Posts

    • Blood sugar, hunger, celiac
      Thanks for your reply. I'm not sure how much fat I'm having, I will check. That could be contributing. Yup I do know about the link between Type 1 and celiac. But when it was first discovered my blood sugar was high, my insulin was tested and it was high...actually it was double the normal amount. C-peptide was tested too and I don't remember exactly but I think it was slightly high? If I had Type 1 or LADA, wouldn't my insulin be lower? It is strange though how I have none of the risk factors for insulin resistance and/or type 2... And in fact I had been on a super healthy whole food, "anti-candida" diet for several years before my blood sugar suddenly went really wacko!
    • CALL TO ACTION: YOUR INPUT IS REQUESTED BY THE FDA ON GLUTEN-FREE ISSUES
      FDA proposed rule on gluten-free labeling of fermented or hydrolyzed foods: If you haven’t already, please take the time to comment on the rule. The comment period closes February 16. But this is truly a CALL TO ACTION.  Your input is needed. You have a voice, you are an advocate for the gluten-free community. Now is the time to stand up and be heard.  Your voice, your words, can help all of us stay safe when purchasing food labeled gluten-free.  Johnna’s Kitchen posted a sample letter you may find helpful http://injohnnaskitchen.com/2016/01/call-to-action-your-input-is-requested-by-the-fda-on-gluten-free-issues/ It takes almost no time at all to copy & paste Johnna's letter into the FDA comment site & it will help us all.
    • Chipolte New Marinade
      I don't think any of their food was " certified" gluten-free?  
    • "Pre-Celiac" & scared
      Is there anyone else "pre-celiac" and asymptomatic like me who has had long-term success without losing their mind and still enjoying eating out without feeling like you have to stay in a plastic bubble?  This site has been helpful to me these past months.   I don't have it "Yet" and I am scared.  Sorry this is long but I wanted to be thorough: Two years ago I started experiencing GERD (heart burn, pain under my left rib cage, and regurgitation).  After trying probiotics, kambucha, kefir, apple cider vinegar, aloe juice, eliminating chocolate, citrus, tomatoes, spices, cinnamon, mint, alcohol, not eating 3 hours before bed, I was no better. I got an endoscopy/colonoscopy.  The dr found gastritis and esophagitis.  No hernia, infection or ulcer.  He started me on PPI.  I got 99% relief.  After 6 months I decided to go off PPI.  After suffering for 3 months, I went back to dr and back on PPIs for a year.  Because I am young, 39, and the PPIs have side effects, he discussed surgery with me. I went to a specialist. All the tests showed my esophagus was normal but my lower esophageal sphincter was not closing properly.  I was a good candidate and decided on the MUSE, (Endoscopically stapling the esophagus to prevent reflux) When the specialist did his endoscopy (1 year after previous one and before I was on PPIs regularly)  he saw villi damage that looked like textbook Celiac.  HUH?  I don't have ANY symptoms.  No cramps, vomiting, diarrhea, bloating, gas, discomfort, NOTHING.  He took biopsies and the results were "non-specific" perhaps "clinically latent celiac sprue" or a number of other things. So I took blood tests.  The celiac gene test was "susceptible" and I had "high" antibodies, but not positive.  Dr said go gluten-free to prevent  celiac. Did the PPIs cause the villi damage because I couldn't absorb the wheat properly and triggered celiac in me?  It sounds reasonable.   I wonder if now that I have had the MUSE and may be able to stop PPIs, will I be able to digest gluten better? Very interesting.  I plan to call a celiac specialist where I live to discuss this with him. I have not eaten gluten intentionally for 2.5 months now.  It did not help my GERD before the surgery.  Dr said they were unrelated anyway.  I am concerned about CC, breathing in, and accidental ingestion, but since I have no symptoms, I can never tell.  So I take glutenease when I eat out and glutamine powder to try to repair the damage.  How careful should I be since I don't have it "yet"? Amy's gluten-free frozen foods are great, and I read every label at Trader Joe's, eat off the gluten-free menu, corn tortillas @ Mexican, no soy sauce or imitation crab @ sushi, steamed veggies @ Chinese, & gluten-free pasta @ Italian. Member Lisa wrote, "Even though you eat as gluten free as possible, you probably consume close to that amount of gluten due to cross contamination in processed gluten free food and other exposures. ...Eating 100% gluten free is a total improbability. "
      Most people with Celiac can handle 20ppm.  So is that equivalent to breathing in flour?  Having a half a teaspoon of soy sauce by accident in Asian food?  I can live without bread and cookies, but gluten is IN  so many things. Some on this site with Celiac have separate toasters, don't eat out, and don't walk into bakeries while there are others that eat out and eat fries made in shared oil at BK.  Even I haven't done that.  Isn't it dangerous? Thank you for you help!!
    • Pins And Needles
      You sure did nail it! I was too worried it was MS or Lupus or Celiac to be able to really give that option a chance. If anything my guess was low b12. The only obvious things in my diet are Vitamin water and protein bars. If you look at food it's in practically everything in pretty high doses. Going gluten-free uncovered this or made it start. MTHFR gene maybe? Magnesium too low? I haven't taken my multi & am looking up everything I'm eating. Still having the twitches but not near as much in my calves and feet. My arch pain is gone & energy is up a bit. Still twitching though and had some arm and shoulder pain overnight. I read it can be 6 months or longer for nerves to heal.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,706
    • Most Online
      1,763

    Newest Member
    between_spaces
    Joined