Very Weird, Rheumatoid Or Celiac?

[Staceyj]

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?

[plantime]

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!

[Guest jhmom]

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

[Staceyj]

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!)

[plantime]

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

[Guest missyflanders]

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

[Guest jhmom]

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!

[GEF]

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

[ryebaby0]

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!