Lupus and Celiac Disease

Hi Pat,

  I think Stacie(jmom) has this and follows the gluten free diet. Hopefully, she will see this soon and help you out. Good luck and let us know how it goes. You will be in my thoughts and prayers.

                                                     ((Hugs)) Babs

Hi Pat,

Yes I have Celiac, diagnosed in Sept 2003. My story is veryyyyyyy long so I will give you the short version and feel free to ask me more questions!

My problems seem to literally begin overnight, I woke one morning not feeling well and it stayed continuous for a VERY long time. After losing 40lbs in 2 months, feeling sick every single day, going through test after test for over a year with no answers I learned of Celiac. Since all of my other test were negative or not enough to make a dx I chose to get tested through a private lab called www.enterolab.com . With this test you can be GF up to 6 months and still get accurate results. With the other tests at the docs office (blood or biopsy) you must remain on a regular diet. My results were positive and I immediately started the GF (gluten free) diet and could tell a difference right away, my abdominal pain was gone. I continued to have GI probs (mainly diarrhea) but later learned that was due to Lupus.

Here is a great site with a lot of information about Celiac and other "related A-I diseases" www.celiac.com . Celiac doesn't cause lupus but as you know once we get one A-I disease we are more likely to get others too (lucky us, huh?). I can't say that I can tell a difference in my lupus symptoms being on a GF diet but I have heard some people with Lupus eliminating gluten and seeing an improvement in joint pain, etc.

A gluten free diet is not really as bad as it sounds. Yes you have to read every single label until you become familiar with the products you buy all the time (of course I still look at labels no matter how many times I've bought the product). But it is a MUCH healthier way of eating, and for me no amount of pain is worth eating gluten. I can still eat regular things like taco's, spaghetti, meat, veggies, fruit, etc. and I have found GF sweets such as cake, brownies, bagels, bread, etc. There are a lot of gluten free products out there that are NASTY so it's basically a trial and error kind of thing, depending on your taste. I can give you a list of things my daughter and I like the best.

This may be WAY more info than you were looking for... I hope you find out something soon.

You are welcome Pat, now don't get me wrong there are a lot of people out there that have no weight loss but a ton of GI problems with Celiac, I think that is another thing that is overlooked by doctors. They are expecting a sickly person to walk thru their door and as we all know that sometimes just doesn't happen.

I am interested in knowing what your rheumy has to say about a gluten free diet, let me know.

There for a while I was very worried about my health and my doctors were too. Everything I ate went right thru me and even after going GF and after being dx I continued to loose weight, finally after going on Imuran I started doing better, I could tell a difference right away.

Let me know if you have any more questions! Hugs

Pat, do you have a lot of GI problems? Celiac can also effect the skin and vitamin deficiencies. Now remember, don't rule things out just because they don't show up in blood or biopsies. If you get all the test results back and you aren't satisfied then try the gluten free diet for a couple of weeks and see how you feel. If you are going to do this you will need to make sure you are 100% GF during this time. Let me know and I can give you some good links that have lists of foods that are gluten free.

I hope the decrease in CellCept helps your blood levels and doesn't affect the way you have been feeling! I know when I had the kidney scare earlier this year I was a nervous wreck because sometimes NSAIDS can affect your kidney's and I would have to stop taking them. Now, I know how my body reacts to changes in my meds and I was scared of it throwing me into a huge flare but thankfully I didn't have to go down that road!

Let us know what the tests show! Hugs and love to you!

I have Lupus, Crohn's and Gluten Intorlerance (we thought celiac but thankfully it is not).  Going off gluten has done wonders for not only the Crohn's but also for the Lupus flares and joint pain.

It is not an easy diet to follow when starting out but once you get the hang of making your own things it is pretty easy.  I also tend to follow a Low-carb diet as it is, so I do that when eating out also.

Stacie, I didn't look into Celiac disease or a gluten free diet because I've had symptoms that suggest that I might have it, but rather because I was interested to understand the relationship, if any, between Celiac's disease and lupus, RA and sjogren's. I think you'll all agree that it's worth looking into anything and everything if there's even the remote possibility that something could be a contributor to the way we feel. Did stopping your NSAID's help with your lab results? What a relief that it didn't send you into a major flare. But what are you taking now?

Ellen, it's stories like yours that encourages me to keep looking for answers. Interesting what you say about restaurants Des, because just Monday my hubby took me to a restaurant that includes guten free selections, and in fact the woman who works there as programs director (there's a restaurant, fitness club, spa, etc. that all focus on wellness) has Celiac's disease so we had a long conversation. She's tiny because of a sudden weight loss due to her disease.

This whole discussion does bring home how important our diets are and how the food we eat impact our health.

Hippi, I agree with you that it sounds like a hard diet to follow, especially when eating in restaurants. But oh, to feel better! I'm feeling bad today - achey and tired and my joints are hurting more than ususal. I can't believe it's because I cut my cellcept dose in half last night and this morning. I did have a real busy day yesterday and I hope that's what it was. I skipped my sock class this morning and will stay home and rest and knit here instead. I hope you're having a good day today.

And I hope you are all feeling well! Thanks for your comments and concern.

Love,

Pat

Des, there are a lot of places that offer a GF menu but it's been my experience that some of them are not very knowledgeable about it. I think some places are really trying hard but I have to scrutinize everything when I eat out. So I don't eat out that much, I feel the safest at Chick-fil-a and only at 2 locations near me, I've already ruled out one because they made me sick with cross contamination issues. My local Outback tries really hard but can't seem to get it right and of course I am the one that has to pay for their mistake.

Pat, yes I've heard people with lupus eating GF and how it helps with their joint pain, etc I hope it helps with your symptoms too. I personally don't see an improvement of course I've been GF since 2003 and there is no way I would eat normal food again to experiment, so maybe it helps more than I know. With my kidney scare I didn't have to stop my NSAIDS, the doctor had me redo the 24 hr urine test and it came back normal (had to get my volume up if you know what I mean). I am now back on my original NSAID (Piroxicam) after trying 3 others which threw me into a flare and did nothing for my joint pain. I will probably have another 24 hr test soon as my kidney ultrasound showed some fullness in one of my kidney's and they are both smaller than normal. My doctor's are trying to keep a close eye on things which is good because kidney disease is very silent!

Hugs and love to you! I hope you feel better soon!

Judy, thanks for the information and for the suggestion about the book. I think you may be right! I hope you found the info you were seeking for your friend. It takes a pretty good friend to do research like you're doing. Let us know how we can help.

Pat

Marji, you really have some health struggles that must be difficult to control, in addition to your autoimmune diseases. I'm glad that a gluten free or low carb diet helps you. I've been working hard to eat more fresh fruits and veggies and to cut out gluten for a while, but never would have thought about vitamins and pills having gluten. I wonder why we don't all to to med school just to learn all there is to know about our diseases. It sometimes astounds to me realize how little I really do know about them.

Thanks Stacie!

Hi Moonjazz!! Welcome to the forum! I hope you will start a new topic and introduce yourself. Most members won't see your first post here in this topic (they may not peek at it unless they have celiac). Glad you found us!! Its a really support group here. Blessings!

for anyone that does gluten free- i work at starbucks and we have a gluten free valencia orance and almond pastry now. We give it to u in the package so as for it not to be contaminated with anything else. its yummy!!

joan