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Celiac And Lupus Relationship And Possible Mimickers
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Hi everyone, I wanted to tell you all about an article that I came across as I was researching dsDNA and celiac correlation. When I had my testing done for celiac disease, my dsDNA was also detected which is a marker for SLE (Systemic Lupus Erythematosus) but my neurologist, family doctor and several other second opinions later, they all say I do not have lupus because of the low titer range being 1:10 and I never get the rashes nor joint pain association. I have had seizure type activity, photophobia, neuropathies, and weak muscles that I surely thought was lupus, however I never have had all of the criterion and things just didnt quite add up. I also tested positive for the deamidated gliadin peptide igG (DGP IgG) which indicates celiac disease.

In doing research I found an article wriiten about a woman, Margaret Romero, who was diagnosed with lupus nephritis, and she found out that she had the genes for gluten intolerance. Her story is pretty remarkable and I wanted to ask you guys if you have heard of her before and what you think about her story. I will attach a link but I am not sure what the rules are for posting for links, but here it is, I hope that you can read it and see her success. http://celiaccorner.com/celiac-gluten-free-blog/surviving-a-dual-diagnosis-of-lupus-and-gluten-sensitivity/

I also found this study for those with lupus like symptoms and even diagnosis which turned out to be gluten sensitivity. http://ard.bmj.com/content/63/11/1501.full I am not saying this is EVERY case because everyone is different. I think for learning and knowledge purposes it can be very informative. It also may offer some of us relief. I wonder if celiac really can be mistaken for lupus? Has this ever happened to anyone here? Thanks in advance and I really hope that it is okay that I am giving these links for others to read.

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Interesting links. I'm glad you posted them. :)

I suspect SLE could be a possibility for me, and I am waiting (and waiting) to see a rhuemy about it. I did not have a positive dsDNA, or any other antiautobodies that are normally screened for lupus. My only blood work was positive ANA titres (1:160) years ago but my recent one was considered negative (1:80). My SLE-like symptoms include arthritic joint pain that occurred on and off since my early 20's, ITP (thrombocytopenia), headaches, hair loss, fatigue, and a blush/rash over my cheeks and nose (but I also have some roseacea so it's hard to tell where that ends and the rash begins). I have a some neuropathy too but I think it's from a bad back.

So, I have some symptoms of SLE, and they actually got quite bad with a "flare-up" after I had been gluten-free for about 2 months, but now the symptoms are disappearing. I have less symptoms now than I did 9 months ago and I have no idea if it is just because this autoimmune problem (possible SLE) is waning or if it's because I have been gluten-free for 6 months or if it's because my hypothyroidism treatment is getting closer to optimal range. :huh:

It's possible that celiac disease is gave me Lupus like symptoms. I never experienced an immediate change in my SLE-like symptoms after consuming gluten except for my headaches; those seemed to happen a few hours after gluten. The arthitic like pain, face rash, and pain seem unrelated to gluten as far as I can tell. I know that my hair loss is related to gluten consumption because I started getting a lot of regrowth after eating gluten-free for a couple of months but then when I had an SLE like flare, it fell out again so it is linked to a couple of causes... Darn it... My problem is staying patient so I can give it enough time to be able to tell what is what! LOL

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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