Hi everyone. I am desperate to find something other than lupus that could be wrong with me. My violin teacher told me that celiac disease can have a lot of the same symptoms as lupus, as well as abnormal bloodwork. Is it possible that this or a gluten intolerance could be what is going on? Has anyone ever had any experience with this?
My daughter tested positive for Celiac marker. Celiac Disease runs in the family. She is now Gluten Free and also eats a Vegan diet. She feels much better. Celiac Disease could have triggered her SLE and Vascullitis. You might want to try a Gluten Free diet. Good luck! :)
You may need a test for same, but gluten free helps a lot of autoimmune issues…since it helps overall inflammation in the body. Check for celiac too though. … can’t hurt. Try Gluten free anyway…also can’t hurt.
Hi LMB,
I was tested for Celiac disease and it came back negative instead i have IBS both can be caused by Lupus besides coming on naturally ....you need to cut out Gluten foods as it irritates it badly as the symptoms for celiac are inentical to IBS plus it's an autoimmune disease which "Rob" stated.
I had a biopsy done besides a blood test to make sure and they both came back negative.
This link may also help you besides the excellent info member's have given.
http://www.netdoctor.co.uk/diseases/facts/glutenallergy.htm
Best of luck on finding out. Terri xxx
Hi LMB, I have ataxia (SCA) and have let go off all gluten now since 2006. I had the blood tests and came out on the normal end, which ment I didn't have it. My Dr. suggested that I go off anyway of Gluten for a few weeks just to see how my body felt being off of it. She said "What's the worst that can happen? You could always include it back into your food plan if you don't see a diffrence. Just test it and see." So after 2 weeks I only noticed a slight diffrence and stayed off to see if I would get any resultse that could help me. Well, after a few months (about 3 for me) I stoped tripping and lot my siatic nerve pain. As I contniued staying off I've seen more and more resultse with all of my symtoms. One is my aches are not 1/2 as bad. I still have some from time to time and found other tricks to help temperarily with them. So for me it's not a cure but like my Dr told me she thought it was more of a gurantee that eating as healthy as I try to focus on gurantee's that I will obsorb all of my vit and minerals that my body needs to be as prepaired as possible to have to deal with other symtoms well.
I know ataxia is diffrent in many ways than Lupas but I've also given up refined sugars that cause inflamation that I read really helps. And it has made a diffrence for me so I wanted to share this in case someone will try this and give it lot's of time. I figure I had Gluten for somany years it would take lot's of time to see if it could really work for me. My advise if you try going off is make sure to give it more time than you think. At first I think it's very suttle but totally worth it when you get even one result from letting go of it! Good luck! :0)
Hi all, I wondered the same thing, but my results were negative for celiac disease. My husbands specialist suggested that I may be Wheat intolerant which is a totally different thing and to try excluding Wheat for a while. The difference is amazing. Just something to think about.
Hi Karen,
The only trouble with these tests coming back negative they could also be false readings which the lupus as given off as it fluctuates our bloods.
When i was tested with my bloods... i spoke with the gastro specialist who's dealt with me as he knows about lupus besides my history and i told him straight i hope you know that could come back false and he reply "Yes".
So when it came back negative, then he did a biopsy of my intestine and that confirmed i had'nt got it, with furthur examination and by also my rheumo it was then comnfirmed IBS.
Well with coeliac and IBS wheat should be knocked out as it irrates the conditions terrible. xxx
I have a friend who has Lupus, Celiac disease (her two teen girls have Celiac as well) and Hashimotos. There are times when she isn't sure which one is causing her sympoms, or if they all are. Good luck, I hope you're able to find out. Maybe you can be tested for Celiac? If you have it the important thing is to not have any gluten. and so many meds have gluten in them. My friend and her daughters stay away from gluten, and they've found many gluten free items at grocery stores. if they stay gluten free they feel a bit better. If my friend has gluten her abdomen swells, she gains weight, like 12 pounds over night, and is so sick and miserable.
Keep us posted. Good luck, and I hope you can get tested. I think it's a blood test but I'm not sure.
The best way without the test is to try going gluten free and more whole foods vegetables. Otherwise you should ask your doctor for the test. My endocrynologist is testing me, but I'm not sure if he'll come up with anything since I've been avoiding gluten since 2009.
I've had to cut out alot of foods which i love because of my IBS but "lupusmomof2" stated a good issue as i still suffer even though i'm on spasm tablets besides medication for it, alot of my other tablets contain Gluten so i'll never be free of the issues and pain it causes.
I have not been told that I have celiac but I am gluten intolerant. When I started my gluten free diet I actually went through withdrawal that lasted about 2 weeks. I can definitely tell a difference in the pain. I hurt so much that I could not tell whether it was muscle or joint pain. I still hurt but now I can tell where it's coming from. You definitely should try getting rid of gluten. You will basically be eating fruits, veggies and meats. No more goodies from the vending machines.
Hello grandma,
Sorry to hear you was going through withdrawal symptoms nothing worse than those and i've been there in the past with different issues and it's enough to drive you mad.
Well that's nice to know that you've studied your own body on different details because all this helps...i really hope you'll feel better soon.
Thinking of you dearly Terri xxx
grandma14 said:
I have not been told that I have celiac but I am gluten intolerant. When I started my gluten free diet I actually went through withdrawal that lasted about 2 weeks. I can definitely tell a difference in the pain. I hurt so much that I could not tell whether it was muscle or joint pain. I still hurt but now I can tell where it's coming from. You definitely should try getting rid of gluten. You will basically be eating fruits, veggies and meats. No more goodies from the vending machines.
Yes Terri the withdrawal thing was horrible but I think it was worth it for the pain relief I got. I still feel like I'm on a roller coaster......can't move part of the time, can't be still part of the time, can't wake up, can't sleep, on and on and on. Every time I feel like I'm dealing with everything I find out I'm really not. "Acceptance" has been very hard for me but I am working on it. I hope you are having a good day/night my friend.
Tez_20 said:
Hello grandma,
Sorry to hear you was going through withdrawal symptoms nothing worse than those and i've been there in the past with different issues and it's enough to drive you mad.
Well that's nice to know that you've studied your own body on different details because all this helps...i really hope you'll feel better soon.
Thinking of you dearly Terri xxx
grandma14 said:I have not been told that I have celiac but I am gluten intolerant. When I started my gluten free diet I actually went through withdrawal that lasted about 2 weeks. I can definitely tell a difference in the pain. I hurt so much that I could not tell whether it was muscle or joint pain. I still hurt but now I can tell where it's coming from. You definitely should try getting rid of gluten. You will basically be eating fruits, veggies and meats. No more goodies from the vending machines.
Hello grandma,
With drawals from anything you body loves is terrible at times and more so if you carry a very addicitve system.
grandma i don't want to put your spirits down, as you've been so positive alot more since joining the site but in general i find Lupus a total roller coaster time and never ends your either up or down but the better times with it never seem to last as long as the down side....SAME REALLY.
Well i think your doing well with your exceptance and familurizing symptoms the way you've spoken with me and that's good and when you have Lupus and diseases connected with it...that's the first thing to establish, so you know how to deal with issues alot more.
My brains been abit of concentration today and my legs are getting no better....roll on the new rheumo appointment.
Love you loads Terri xxx
Ihave been recently diagnosed for SLE and diagnosed early in the year with Celiac. I have been gluten free and while that has helped me put on weight, it has not helped the SLE pain. I hope you find the answers.
Hello LisAnn,
I also have SLE like yourself and i suffer terrible with bad IBS.
Being gluten free may not help your SLE plus it's according to how bad you have it in your system....you need med that suits your system for the SLE.
Love Terri xxx
LisAnn said:
Ihave been recently diagnosed for SLE and diagnosed early in the year with Celiac. I have been gluten free and while that has helped me put on weight, it has not helped the SLE pain. I hope you find the answers.
Hi Jeannie, can I ask, do you use 'sugar in the raw' by any chance. That's what I use, and love it!
JeannieSB said:
Hi LMB, I have ataxia (SCA) and have let go off all gluten now since 2006. I had the blood tests and came out on the normal end, which ment I didn't have it. My Dr. suggested that I go off anyway of Gluten for a few weeks just to see how my body felt being off of it. She said "What's the worst that can happen? You could always include it back into your food plan if you don't see a diffrence. Just test it and see." So after 2 weeks I only noticed a slight diffrence and stayed off to see if I would get any resultse that could help me. Well, after a few months (about 3 for me) I stoped tripping and lot my siatic nerve pain. As I contniued staying off I've seen more and more resultse with all of my symtoms. One is my aches are not 1/2 as bad. I still have some from time to time and found other tricks to help temperarily with them. So for me it's not a cure but like my Dr told me she thought it was more of a gurantee that eating as healthy as I try to focus on gurantee's that I will obsorb all of my vit and minerals that my body needs to be as prepaired as possible to have to deal with other symtoms well.
I know ataxia is diffrent in many ways than Lupas but I've also given up refined sugars that cause inflamation that I read really helps. And it has made a diffrence for me so I wanted to share this in case someone will try this and give it lot's of time. I figure I had Gluten for somany years it would take lot's of time to see if it could really work for me. My advise if you try going off is make sure to give it more time than you think. At first I think it's very suttle but totally worth it when you get even one result from letting go of it! Good luck! :0)
Hi grandma,
I surely can relate to what you are talking about! Just with the sleep part, I go from only being able to sleep a few hours at a time, to sleeping for days, or stretching out on the couch, to straighten up my back while my tea cools a little to waking up 6 hours later. Sooner or later the body has to rest! And you get one pain area somewhat under control, and something else chimes in! It's just always something! The Rheumatologist gave me valium to take at night, sometimes it works to relax the muscles so I can actually sleep like a normal human being!
Here's hoping for some balance!
Isn't it just the greatest being a Grandmother? I know I need to get myself together, my great grandson is coming Saturday! He is 2 and begs to come, and gets here and refuses to leave! It takes me, Pap, and my Mom, and he lovingly wears us all out! It's the greatest tired in the world!
Hugs,
SK (they call me Mimzie, or Mim!)
grandma14 said:
Yes Terri the withdrawal thing was horrible but I think it was worth it for the pain relief I got. I still feel like I'm on a roller coaster......can't move part of the time, can't be still part of the time, can't wake up, can't sleep, on and on and on. Every time I feel like I'm dealing with everything I find out I'm really not. "Acceptance" has been very hard for me but I am working on it. I hope you are having a good day/night my friend.
Tez_20 said:Hello grandma,
Sorry to hear you was going through withdrawal symptoms nothing worse than those and i've been there in the past with different issues and it's enough to drive you mad.
Well that's nice to know that you've studied your own body on different details because all this helps...i really hope you'll feel better soon.
Thinking of you dearly Terri xxx
grandma14 said:I have not been told that I have celiac but I am gluten intolerant. When I started my gluten free diet I actually went through withdrawal that lasted about 2 weeks. I can definitely tell a difference in the pain. I hurt so much that I could not tell whether it was muscle or joint pain. I still hurt but now I can tell where it's coming from. You definitely should try getting rid of gluten. You will basically be eating fruits, veggies and meats. No more goodies from the vending machines.
I am newly diagnosed and having so many different symptoms, I'm not quite sure which way is up at this point. But I have decided to go mostly gluten free and up the fruits/veggies and omega foods. Plus, I was so upset from the Gabapentin putting weight on me so quickly, I was hoping the lifestyle change may help with all of the above.
I'm only on the new diet for a week now and haven't noticed a huge change yet other than I feel 'lighter' :) Here's hoping something will make a difference soon :)
Hi momma2mm,
I wish you all the best of luck with your foods and going gluten free and hope you can lose that extra weight....Roni as done so well exercising at a certain pace besides her eating you could always ask Roni. xxx
momma2mm said:
I am newly diagnosed and having so many different symptoms, I'm not quite sure which way is up at this point. But I have decided to go mostly gluten free and up the fruits/veggies and omega foods. Plus, I was so upset from the Gabapentin putting weight on me so quickly, I was hoping the lifestyle change may help with all of the above.
I'm only on the new diet for a week now and haven't noticed a huge change yet other than I feel 'lighter' :) Here's hoping something will make a difference soon :)