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      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?
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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?

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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!

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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

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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!)

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

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

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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!

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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

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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!

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    • Sjogren's, Celiac, or both?
      Doing great! Been gluten-free for two years, now. No symptoms, antibodies are almost nil and certainly where they should be. Been glutened really bad twice (ate 4 slices of bread I thought was gluten-free once, and ate pasta I thought was gluten-free once) was in bed for three days each time and felt like crap for a couple of weeks. Learning experiences, not done that in quite a while. 
    • Can treatment for Giardia reverse active Celiac
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    • Sjogren's, Celiac, or both?
      Hey, happy to see your posting, Fenrir.  I hope you are doing well!  
    • Sjogren's, Celiac, or both?
      Well, you do not HAVE to get tested, but since Celiac Disease is genetic and you have kiddos, you should seriously consider the pros and cons. Take for instance, my hubby.  He went gluten-free over 15 years ago per the very poor advice of his GP and my allergist.  "Try giving up wheat and see how you feel."  Well, it worked.  No more sinus infections, feeling achy like he had the flu, etc.  He seriously struggled the first year without a proper diagnosis, but eventually good health became more important than rye bread.  Twelve years later, I was anemic (well I have been all my life)  and went for a routine colonsocopy because all my friends were getting them (the perks of the over 50 club).  During my GI consult he recommended getting scoped at both ends because he suspected celiac disease.  I could not believe it!  But blood tests and my biopsies proved that I had celiac disease.   Hubby will be the first to say that I have had more medical, family and friend support with a formal diagnosis.  He refuses to do a gluten challenge.  His mom was diagnosed with MS and literally died from malnutrition, so we suspect she had celiac disease.  He definitely has a problem with gluten.   Thankfully, my dx has allowed for my daughter to be tested every few years (even without symptoms).  She does not have celiac disease or any other autoimmune disorder yet.  I say yet, because the gene pool for AI issues is huge on both sides.  Good news is that cancer is rare but you never know.   So, this is a decision you will have to make.  An endoscopy requires a much shorter challenge.  Something to consider.  Gene testing too will help rule out celiac disease and might be the first thing to consider as you do not have to be on gluten for that.   I wish you well! 
    • Sjogren's, Celiac, or both?
      Everything you listed above very well could be Celiac Disease and not Sjogren's, but people with one autoimmune disease are at a higher risk of getting another one.  Your GP clearly is working with old knowledge in regard to Celiac Disease. There are probably more people who suffer from constipation from Celiac than loose stools. I know for me I never had diarrhea at all, but I was backed up something fierce.  I also had swollen joints, headaches, abdominal pain, memory issues, high liver enzymes, fatigue and general cloudy head.  Not many of these are symptoms an uninformed Doctor would think to associate with Celiac.  You really have to show up prepared to be your own advocate, tell the doctor that according to many of the GI specialists who work with Celiacs (see University of Chicago's celiac disease Center) these are all symptoms that warrant a proper workup for celiac disease.  It took me 6 months, two biopsies and an unneeded surgery to get diagnosed and that isn't as bad as some. 
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